Adv in Neo Care February2012

EgyptianPediatrics Yahoo Group
http://health.groups.yahoo.com/group/ EgyptianPediatrics/
Patient Advocacy and Protection

Catherine L. Witt, MS, NNP-BC
he sexual abuse scandal at Penn State raised a lot of questions in the media regarding who knew what was happening and who failed to report the abuse to authorities. One cannot help but be appalled at the idea that witnesses or others who knew what was happening stood by and allowed it to continue. Their silence makes them complicit in the abuse of young victims who did not have a voice. None of us would agree that this is acceptable. Yet, how many of us have been witness to unsafe or unethical practices in our place of employment and failed to act. Most of us have, hopefully, not been witness to something as heinous as sexual abuse of a minor. But we must ask ourselves whether we have failed to act in other ways, and perhaps put the wellbeing of our patients or our coworkers at risk. In 2000, the Institute of Medicine cited that 44 000 to 98 000 people died each year from medical errors.1 Despite much dialogue, publicity, regulations, and changes in procedures, there is no reliable evidence that we have made any progress.2 And, it is also not clear that all of the procedures that have been put in place make any difference. One of the difficulties in determining the error rate is lack of good data about how often errors occur in health care agencies and what type of errors those are.2 All the regulatory agencies, government oversight, rules, and regulations cannot take the place of vigilance of those at the bedside. As nurses, we are the ones who are present with the patient 24 hours a day, 7 days a week. By nature of our work, we are in positions that can allow us to observe unsafe practices by others, uncover errors, and intervene in near miss events that might have resulted in an error. This includes not just errors by individuals, but system problems or practices that may harm significant numbers of patients. One of the reasons we do not have good data about numbers of errors is that health care workers are often reluctant to report errors when they occur. This underreporting makes it difficult to determine
The author declares no conflict of interest. DOI: 10.1097/ANC.0b013e31824488d1 Advances in Neonatal Care Vol. 12, No. 1 pp. 1-2
not only the number of errors happening, but what factors contribute to those errors. Why are nurses reluctant to report errors? We are supposed to be patient advocates. The Code of Ethics for nurses clearly states that The nurse promotes, advocates for, and strives to protect the health, safety and rights of the patient,3 including identifying and reporting unsafe practices. This includes going outside the system to regulatory boards if necessary. This requires health care professionals to be diligent about ensuring patient safety and acting as a patient advocate. Yet it is often difficult to get nurses to report errors or near misses. Several recent studies examined some of the reasons for this reluctance.4-7 Loyalty to coworkers is one reason, particularly if the relationship is a close one. Nurses expressed difficulty in reporting an incident if a personal or professional relationship might be affected. Loyalty to an employer may also have some effect as well, particularly if a nurse has a strong link with self-identity and belonging to an organization. Some nurses reported that they did not report incidences if they seemed minor or if no harm came to the patient. The difficulty with this approach is that it puts individuals in a position of deciding what is minor, and fails to uncover problems that could become more serious in the future. Another common reason was that nurses felt that nothing would be done about the issue or problem.4-7 This overlooks the fact that nothing can be done about problems no one knows about. Because the person reporting the incident is not privy to all consequences or disciplinary action taken, he or she may assume nothing was done. Certainly health care agencies can work on transparency in regard to how errors are addressed, but actions regarding employees often have to be kept confidential. Perhaps the most alarming reason was that small errors that happen frequently come to be seen as normal. In this case, no one thinks of reporting them because they do not even register as errors. In some cases, it is a system design that becomes how we do it here and one either goes along with it or does not work there. Nurses also weigh the consequences of reporting unsafe behavior and the likelihood of consequences and possible emotional costs.6,7 Fears of retaliation,
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Copyright 2012 National Association of Neonatal Nurses. Unauthorized reproduction of this article is prohibited.
Witt
job loss, and ostracism by others are significant in some situations. While whistle-blower protection may protect nurses from retaliation from an employer, they do not protect them from other methods of retaliation, as in the case of the Texas nurses who reported a physician to the state medical board and were then charged with misuse of official information by the district attorney.7 While one had her case dismissed and one was acquitted, the emotional and financial cost was tremendous. Obviously if we are going to improve the safety and efficacy of the care we give, we need to be able and willing to identify errors, near misses, and problems in process without the fear of reprisal. Failing to report is to fail our duty to our patients. It also fails to highlight processes that may cause someone else to make the same mistake. We cannot go another 10 years, hoping to improve on the Institute of Medicine report. As individuals, we can encourage one another to fill out occurrence reports, even on things that seem small. We must report not only errors by others but those we make ourselves and refrain from encouraging a culture of silence among
our coworkers. We cannot assume that nothing will be done. Nothing can be done if it is not reported in the first place. We must also advocate for policies and laws that protect nurses who come forward, not only from retaliation from coworkers and employers, but from criminal prosecution and civil suits as well. It is our ethical duty to be advocates for our coworkers and our patients.
References
1. Institute of Medicine. To Err Is Human. Building a Safer Health System. Washington, DC: National Academies Press; 2000. 2. Consumers Union. To Err is humanto delay is deadly. http://www.safe patientproject.org/pdf/safepatientproject.org-to_delay_is_deadly-2009_ 05.pdf. Published 2009. Accessed November 29, 2011. 3. American Nurses Association. Guide to the Code of Ethics for Nurses. Interpretation and Application. Silver Spring, MD: American Nurses Association; 2010:23. Nursesbooks.org. 4. Grube GA, Piliavin JA, Turner JW. The courage of ones conviction: when to nurse practitioners report unsafe practices. Health Commun. 2010;25:155164. 5. Jackson D, Peters K, Andrew S, et al. Understanding whistle blowing: qualitative insights from nurse whistleblowers. J Adv Nurs. 2010;66:2194-2201. 6. Peters K, Luck L, Hutchinson M, Wilkes L, Andrew S, Jackson D. The emotional sequelae of whistle blowing: findings from a qualitative study. J Clin Nurs. 2011;20:2907-2914. 7. Black LM. Tragedy into policy. A quantitative study of nurses attitudes toward patient advocacy activities. Am J Nurs. 2011;111:26-35.
www.advancesinneonatalcare.org
ELIZABETH DAMATO, PHD, RNC, CPNP Section Editor

Board Member of National Association of Neonatal Nurses
MEMBER SPOTLIGHT, SPECIALIST DESIGNATION, DUES INCREASE, 2012 ANNUAL CONFERENCE, AND NEW PUBLICATIONS
M EMBER S POTLIGHT: AN I NTERVIEW WITH HAIFA SAMRA
Sometimes world events shape how we begin our careers. That was certainly the case for NANN member Haifa Samra, PhD, RN-NIC, of Brookings, South Dakota. She was born and raised in Lebanon, and the civil war in the mid-1970s severely limited her career options as a young adult. Haifa and her family were displaced Haifa Samra, PhD, RN-NIC, is an to another side of the assistant professor of nursing at country, and the only South Dakota State University, educational option Brookings. available for her was to train as a radiology technician. She learned about nursing while attending American University in Lebanon, and she began
Correspondence: Katie Macaluso, BA, National Association of Neonatal Nurses, 4700 W Lake Ave, Glenview, IL 60025 (kmacaluso@nann.org). No grant funding was involved in the production of this article. The author declares no conflict of interest. Copyright 2012 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0b013e318242dfa1
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taking nursing courses immediately after finishing her radiology training. Because the educational program at the university is similar to those found in the United States, she was qualified to take the National Council Licensure Examination upon graduation in 1982. Haifa had a few shifts in the neonatal intensive care unit (NICU) as part of her pediatrics rotation during nursing school and was immediately struck by the camaraderie of NICU nurses and physicians. She felt that the team approach was apparent and stronger than she had observed in other hospital units. Following graduation, she went to work in a NICU in Saudi Arabia. Haifa enjoyed watching how premature infants progressed from very immature babies needing maximal support to eventually being able to go home. NICU nursing combines the fast pace of the emergency room with the complexity of the ICU. The high vigilance, high level of critical thinking, and clinical judgment demanded in neonatal nursing is tempered by the opportunity to develop personally rewarding therapeutic relationships with families. I am always humbled by how resilient families are when dealing with a sick newborn, Haifa said. Because Lebanon was still in political turmoil and war, safety issues kept her from returning. Married by now, Haifa and her husband relocated to Nevada in the mid-1980s. In addition to working as a NICU staff nurse, Haifa worked a charge nurse, became certified to insert peripherally inserted central catheters, and served as a transport nurse and travel nurse. Within her unit, she was involved in quality-improvement initiatives, updates of policies and procedures for The Joint Commission visits, and committees that redesigned care delivery to accommodate patientcentered care and managed care. These activities
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made her realize that she needed formal management and leadership training. When her husbands career led them to South Dakota in the 1990s, Haifa decided to return to school. Although she wanted to pursue a degree in nursing administration, that program was not available in the area at that time. Instead, Haifa earned a nonnursing masters degree in industrial management. As a student in that program, she met a professor who suggested that she get a doctoral degree in biological sciences with emphasis on maternal child nutrition. Her dissertation research examined how parenting behaviors, nutrition, and physical activity affected bone outcomes in formerly preterm children aged 3 to 8 years. During her doctoral studies, Haifa met the dean of the College of Nursing, who told her that she would be unable to teach in a nursing program without a graduate degree in nursing, so she took additional courses and graduated in 2007, with both a masters degree in nursing education and a doctoral degree in biological sciences. Since graduation, Haifa has worked on her program of research as a faculty member at South Dakota State University. She has served as a principal investigator and coinvestigator on multiple research projects, is a published author, and has presented at local and national conferences. Her research program continues her dissertation work by focusing on health outcomes of preterm infants and families concentrating on issues pertinent to families who live in rural areas. Her recent work examines how parenting characteristics (eg, geographic isolation, overperfection) affect mother and infant health outcomes. Haifa sees technology as an exciting challenge facing nurses today and feels that it transforms the way we practice, teach, and do research. Haifa remains active professionally, serving as an editorial board member for the Journal of Perinatal & Neonatal Nursing and as a guest editor for Newborn and Infant Nursing Reviews. She is also the project manager for NANNs newly established Research Institute Steering Council. Haifa was honored with the South Dakota State Universitys Sherwood & Elizabeth Berg Award, given to junior faculty who show commitment and potential as a new investigator, for her scholarship and commitment to nursing. In reflection of her career thus far, Haifa said that she feels very fortunate to have worked with many leaders who have contributed to her personal and professional growth. She considers her mentor, Dr Jacqueline McGrath, to have been particularly influential. Dr. McGraths compassion, enthusiasm, commitment, knowledge, energy, and accomplishments are very impressive to me. She sees the potential in people and wants to help everyone, she said. Always appreciative of the benefits of NANN membership, Haifa is especially excited about the new focus
on research within the organization. NANN provides neonatal nurses with a rich environment to share information, network, and keep up-to-date on what is happening in the practice and policy arenas. World events have shaped my career and the future may hold many unknowns for me; however, I have enjoyed the journey and I look forward to future opportunities to serve my profession and make significant contributions to the science of neonatal nursing. If you know someone who promotes neonatal nursing and could be featured in the NANN Member Spotlight column, please contact Erin Abbey, senior marketing manager, at eabbey@nann.org.
DEVELOPMENTAL CARE S PECIALIST DESIGNATION

NANN recognizes the importance of developmental care to optimal patient care. This recognition has led to the creation of a developmental care initiative aimed at providing the neonatal community with several educational and professional developmental tools. The Neonatal Developmental Care Specialist designation is one of these. The Specialist designation offers clinicians with developmental care experience an opportunity to apply and assess their knowledge through the completion of a 100-item test. The test includes both cognitive assessment questions and scenario-based cases. See what a recent recipient of the Neonatal Developmental Care specialist designation had to say about her experience: What motivated you to pursue the developmental care specialist designation? I was motivated to achieve formal recognition in this area. I have always been a strong believer in education. In our NICU there is a great need for emphasis on growth and developmentally supportive care not only because we are the cardiac center for all of Nevada but also because of our high census and acuity. We have begun a new chapter with greater emphasis on developmentally supportive techniques to enhance the care we provide to vulnerable neonates. What better way to begin this chapter than with formally educated staff on hand to provide insight? The ones who benefit most from this education are the babies and families for whom we provide care on a daily basis. How did you prepare for the examination (textbook, CNE modules, self-assessment test, or other) and what
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recommendations would you offer to others who are considering obtaining the designation? I prepared for this examination by ordering Developmental Care of Newborns and Infants, offered by NANN. I reviewed the book cover to cover and took notes. Before taking the examination, I reviewed my notes and took the self-assessment offered on the NANN Web site. I strongly advise those who plan to take the examination to purchase a copy of Developmental Care. The book will not only prepare you for the examination but also serve as a reference for you as an expert in your clinical area. What factors influenced which study tools you chose? I prefer to have tangible materials. I chose to order the book so I would have a reference point available, regardless of whether I was at my computer. To learn more about the neonatal developmental care specialist designation and to purchase study tools, visit www.NANNstore.org.
Beverly Malone, PhD, RN, FANN

Beverly Malone, PhD, RN, FANN, has had a career that blends clinical practice, education, and policy within the nursing field and spans more than 40 years. Working as a surgical staff nurse, she earned her masters degree in psychiatric nursing from the University in Cincinnati before eventually rising to the position of deputy assistant secretary for health within the US Department of Healththe highest governmental position held by a nurse in the United States. Dr Malone currently acts as the CEO of the National League for Nursing in New York, an organization comprising 20 000 individuals and 1100 institutional members who are dedicated to nursing faculty development, networking opportunities, and public policy initiatives. In 2010, she was ranked 29th by Modern Healthcare magazine in the article, One of the Most Powerful People in Healthcare.
Diana Jordan
Diana Jordans career path could not be further than that of Dr Malone. A motivational speaker and stand-up comedienne, Ms Jordan will give the closing speech titled The Healing Power of Laughter at this years conference. Entertaining audiences for the past 20 years, she was called one of the funniest people on the planet by Oprah Winfrey, but Diana Jordan arrived at this praise through a life path that typically offers few laughs. Her mother battled emphysema and heart disease throughout the last years of her life. In her attempts to make those final years for her mother cheerful, Diana realized the importance and healing capabilities of laughter. Yet, it was Dianas own battle with breast cancer during which she underwent a mastectomy that cemented her belief in the ability and impact laughter can have on ones healtheven if it comes one laugh at a time. For more information, visit NANNConference.org.
LOOKING AHEAD TO THE 28TH ANNUAL E DUCATIONAL CONFERENCE
See you in Palm Springs, CA!
NANNs 28th Annual Educational Conference, Get Connected, Lead the Way. The Power of Neonatal Care, will take place October 1720, 2012, at the Palm Springs Convention Center and Renaissance Hotel in Palm Springs, California. Take in breathtaking views of mountains and canyons while strolling down tree-lined boulevards. Peruse boutique stores and antique emporiums and then dine in some of the citys famed bistros featuring American, French, Asian, and Italian epicurean delights. While relishing in the citys sights, sounds, and tastes, conference attendees can earn more than 20 hours of continuing education credits, attend poster sessions, network with colleagues in the field, and hear enthralling speakers. NANN is very excited to introduce our keynote speakers for the 2012 meeting: Dr Beverly Malone and Diana Jordan.
CNE NOW!A F REE ONLINE STUDY S ERIES FOR NANN M EMBERS
Staying current on your professional requirements and interests has never been easier than with CNE Now!a series of online learning modules free to all NANN members. Each module reinforces essential knowledge on topics in neonatal nursing care in an engaging format that includes information on physiology and pathophysiology, management strategies, ways to involve parents and families, and areas for further research, along with clinical practice pearls and a crossword puzzle as a learning assessment tool.
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The modules are evidence based and peer reviewed, ensuring that you will be able to identify the best practices in neonatal care and their impact on the patient and family, describe nursing care for various conditions and diagnoses in the neonatal setting, and integrate new strategies that apply to your clinical situation. NANN designates each module for 1 continuing nursing education (CNE) contact hour. To receive credit, nurses must read the material, pass a 10-question posttest, and complete an evaluation. Interested in getting involved in this project as a reviewer or as an author? Contact Kristi Conley, education manager, at kconley@nann.org. NANN gratefully acknowledges GE Healthcare for its support of CNE Now! For more information, visit NANNEducation.org.
G UIDELINE ON AGE-APPROPRIATE CARE NOW AVAILABLE
NANNs latest publication, Age-Appropriate Care of the Premature and Critically Ill Hospitalized Infant: Guideline for Practice, is now available as a free downloadable PDF on NANNs Web site (find it on the Guidelines page under the Education tab). The guideline, developed by Mary E. Coughlin, MS, APN, offers practice recommendations aligned with the 5 core measures for age-appropriate care (also known as developmental care): protected sleep, pain and stress assessment and management, attention to age-appropriate activities of daily living, family-centered care, and the healing environment.
LAURA A. STOKOWSKI, RNC, MS Section Editor
Talk to Me
oise in the NICU has been a prominent topic for study and discussion in recent years. Preterm infants, who spend many weeks in the NICU, are exposed to a backdrop of primarily nonhuman speech noise, including incubator motor noise, ventilators, monitor alarms, telephones, running water, and the like. A very small percentage of the daily noise to which infants are exposed is human speech. Now, some researchers1 from the Women and Childrens Hospital in Providence, Rhode Island, have found one sound that seems to benefit these babies. Using digital recording devices, they recorded and analyzed all of the sounds to which infants were exposed in the course of a day, as well as all of the sounds made by the infant. Vocalizations in these infants were defined as short vowel sounds, coos, and squeals, but not crying. They found that preterm infants begin to vocalize at around 32 weeks gestation, and the rate of vocalizations increases with time. Of greatest interest, parental talk to their preterm infants in the NICU was a strong predictor of infant vocalizations at 32 weeks and conversational turns (infant coos and squeals followed by parental vocal response) at 32 and 36 weeks.1 Preterm infants vocalized more when their parents were visiting, during which time their vocalizations increased by as much as 129%, a finding that was particularly evident at 32 weeks. This study was unique in delineating not just the overall noise level but the types of sounds to which preterm infants are exposed, while being cared for in the NICU. These data reveal that very preterm infants in the NICU are exposed to very little human speech during a critical time in their early development. The researchers point out that this contrasts starkly to a fetus of the same gestational age, who is in an environment where the maternal voice is the most prominent stimulus.1 Adult speech is known to be important in the development of language in children, and preterm infants are at risk for delays in language development.2 Enriching their environment with the regular sound of
Author Affiliation: Inova Fairfax Hospital for Children, Falls Church, Virginia. The author declares no conflict of interest. Correspondence: Laura A. Stokowski, RNC, MS, Inova Fairfax Hospital for Children, 3300 Gallows Road, Falls Church, VA 22042 (Stokowski@cox.net). Copyright 2012 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0b013e318242db20
their mothers and fathers voices could improve language acquisition in these high-risk infants. This study does not answer the question of what is a developmentally appropriate sound environment for preterm infants in the NICU, but it does provide evidence for the benefit of parental interaction with their infants during this time.
References
1. Caskey M, Stephens B, Tucker R, Vohr B. Importance of parent talk on the development of preterm infant vocalizations. Pediatrics. 2011;128:910-916. 2. Ortiz-Mantilla S, Choudhury N, Leevers H, Benasich AA. Understanding language and cognitive deficits in very low birth weight children. Dev Psychobiol. 2008;50:107-126.
Safe Sleep: Its More Than Sudden Infant Death Syndrome Prevention
task force from the American Academy of Pediatrics has updated and expanded its safe sleeping recommendations1 to incorporate the latest evidence about sudden and unexpected death in infancy. These changes reflect the understanding that death in the sleeping environment of infants is not limited to sudden infant death syndrome (SIDS) but includes death from suffocation, entrapment, and asphyxia, as well. The following 3 new recommendations are included in the updated policy statement: Breastfeeding protects against SIDS; Immunizations reduce SIDS risk by as much as 50%; and Bumper pads should not be used in infant cribs. In addition to these new recommendations, the key recommendations in the updated safe sleep guideline aimed at preventing SIDS and other causes of accidental death are as follows: Always use a firm sleep surface. Car seats and other sitting devices are not recommended for routine sleep. The baby should sleep in the same room as the parents, but not in the same bed (room sharing without bed sharing). Keep soft objects or loose bedding out of the crib. Wedges and positioners should not be used. Offer a pacifier at nap time and bedtime. Avoid covering the infants head or overheating the infant. Do not use home monitors or commercial devices marketed to reduce the risk for SIDS. Supervised, awake tummy time is recommended daily to facilitate development and
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minimize the occurrence of positional plagiocephaly (flat heads). All of these recommendations should be part of the routine teaching provided to parents of newborns, in both well-newborn and NICU settings. This teaching should be initiated and modeled by nursing staff well in advance of discharge.
this list. To report a drug shortage to the FDA, e-mail drugshortages@fda.hhs.gov. The hospitals pharmacy department can play an important role in informing practitioners of shortages and helping them find safe and effective therapeutic alternatives.
Reference
1. US Department of Health and Human Services, US Food and Drug Administration. A review of FDAs approach to medical product shortages. October 31, 2011. http://www.fda.gov/AboutFDA/ReportsManualsForms/ Reports/ucm275051.htm. Accessed November 11, 2011.
Reference
1. Task Force on Sudden Infant Death Syndrome. SIDS and other sleep-related infant deaths: expansion of recommendations for a safe infant sleeping environment. Pediatrics. 2011;128:e1341-e1367.
Wanted: Men in Nursing Drug Shortages: Whats Going On?

rug shortages have always occurred from time to time in health care. Lately, however, it seems that every other week we hear of another shortage of a drug that is critical to the provision of care to our babies in the NICU. In 2011, we experienced shortages of fentanyl, morphine, ibuprofen, injectable vitamin K, intralipids, digoxin, furosemide, electrolytes, and many others. Whats going on? Drug shortages occur for many different reasons. Unanticipated quality and manufacturing issues top the list. Production delays and delays in obtaining the raw materials and other necessary components can also delay getting drugs to market. Sometimes drugs are simply discontinued. In other cases, increased demand leads to shortages. These issues often occur without warning, so it is difficult for other manufacturers to respond quickly enough to prevent a shortage on the pharmacy shelves. The next obvious question is, what is being done about drug shortages? The US Food and Drug Administration (FDA) has assumed a prominent role in trying to solve the problems of drug shortages.1 The agency cannot require drug makers to make certain drugs or increase production of drugs. Drug manufacturers are not even required to notify anyone of impending drug shortages or the reasons for these shortages. Still, the FDA is working with manufacturers of drugs in short supply to communicate these issues and to help restore availability of needed drugs. When a shortage is expected, the FDA works with other firms who manufacture the same drug, asking them to increase production, if possible, in order to prevent or reduce the impact of a shortage. A report, titled Review of FDAs Approach to Medical Product Shortages,1 describes in detail the strategies developed by the FDA to mitigate critical drug shortages in the United States. A list of current drug shortages, and the reasons for those shortages, is available at http://www.fda.gov/ Drugs/DrugSafety/DrugShortages/ucm050792.htm. Health care professionals are urged to inform the FDA when they become aware of shortages not on
n important recommendation from the recent Institute of Medicine report, The Future of Nursing: Leading Health, Advancing Change,1 was that the nursing workforce needs to be more diverse, and this includes gender diversity. In other words, we need more men in nursing, but getting them may be an uphill battle in a traditionally female-dominated profession. Right now, approximately 7% of nurses are male, but this proportion is expected to increase. The American Assembly for Men in Nursing has set an ambitious goal of reaching 20% male enrollment in nursing programs around the world by the year 2020. Their campaign, aptly named 2020: Choose Nursing, began with a recruitment initiative, including a series of posters that target school children, young adults, and second-career adults. The message is that nursing represents a limitless variety of opportunities that can appeal to a wide range of interests. The poster campaign will be augmented with a social media campaign that will take advantage of YouTube, LinkedIn, Facebook, and Twitter to spread the message of gender diversity in nursing.2 The American Assembly for Men in Nursing also awards scholarships to undergraduate and graduate male nursing students and recognizes excellence in nursing schools and workplaces for men in nursing.
References
1. Institute of Medicine. The Future of Nursing: Leading Change, Advancing Health. Washington, DC: National Academies Press; 2010. 2. Anderson D. Man enough: the 2020 choose nursing campaign. Minority Nurse. Summer 2011. http://www.minoritynurse.com/nursing-associations/ man-enough-20-x-20-choose-nursing-campaign. Accessed November 11, 2011.
Hand Hygiene: How Are We Doing?

o one disputes the critical importance of handwashing. The problem is in the execution. In settings such as the NICU, nurses need to wash their hands hundreds of times during a typical shift, and it is shockingly easy to miss a few trips to the sink. A recent prospective observational study set out to define hand hygiene opportunities, as well as patient, indication- and profession-specific compliance rates on both day and night shift. The researchers studied
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hand-washing compliance rates in a combined pediatric and neonatal intensive care unit. Hand hygiene opportunities were those times that hands should be washed or cleaned with antiseptic hand rub, and included (1) before patient contact, (2) before aseptic tasks, (3) after body fluid exposure, (4) after patient contact, and (5) after contact with the patients surroundings. The method of data collection was direct observation. The neonatal-specific findings were as follows: Overall compliance with hand hygiene was 61% when caring for neonatal patients. Compliance rates were higher before patient contact and before aseptic tasks (78%) than after contact with patients, body fluids, and patients surroundings (57%; P = .001). On the night shift, hand hygiene opportunities were lower, but compliance was higher (78% nights vs 54% days, P = .003).
Hand hygiene compliance was significantly higher in nurses than in physicians (66% vs 52%; P = .017). The investigators acknowledge that awareness of being observed could have influenced these compliance rates. Their study was unique, however, in finding that compliance with hand hygiene was higher before patient contact or aseptic tasks than after patient contact, when caregivers hands might be contaminated with pathogens acquired in the course of care. Previously, the reverse has been found, leading to speculation that self-protection was a higher motivator for hand hygiene than patient safety. This finding suggests a shift in attitude toward protecting patients from health careassociated infections. Clearly, however, we still have a long way to go.
Reference
1. Scheithauer S, Oude-Aost J, Heimann K, et al. Hand hygiene in pediatric and neonatal intensive care unit patients: daily opportunities and indicationand profession-specific analyses of compliance. Am J Infect Control. 2011;39:732-737.

LINDA IKUTA, MN, RN, CCNS, PHN Section Editor
Breastfeeding the Premature Infant and Nursing Implications

Amanda Black, BSN
ABSTRACT Research indicates that feeding preterm infants at the breast is physiologically less stressful than bottle-feeding. Poor sucking reflexes make it difficult to initiate breastfeeding for these high-risk infants. Mothers need to understand the difficulties of breastfeeding, as well as the advantages for herself and her baby. It is important for nurses to be well educated on how preterm infants are breastfed and how to best support the mother through her experience. The nurse must focus on caring for the infant as well as fostering the mother-infant connection to promote breastfeeding. A mother will need continual support, encouragement, and advice from the nurse, while teaching her baby how to breastfeed. KEY WORDS: breastfeeding, infant, kangaroo care, neonate, premature, preterm
t is well known that breast milk is the optimal feeding choice for infants. Premature infants have immature immune and gastrointestinal systems. There are numerous advantages in breast milk for the preterm infant. The antibodies that they receive from mothers milk can help them remain infection free.1,2 Breast milk is more easily digested, it assists with gastrointestinal maturation, and breastfed infants have fewer instances of necrotizing enterocolitis.3 Breast milk may also be attributed to higher cognitive functioning later in life.3 Despite the obvious advantages of breast milk, the benefits of actual breastfeeding premature neonates, as opposed to bottle-feeding mothers milk, are not well known in the nursing community. The physical act of breastfeeding has multiple benefits for both the mother and the infant. Breastfeeding has been shown to have less physiologic stress on the infant when compared with bottle-feeding.3-6 In addition, the mother-infant bond is strengthened through breastfeeding, and the
Author Affiliation: Regis University, Thornton, Colorado. The author declares no conflict of interest. Correspondence: Amanda Black, BSN, Regis University, 3351 E 120th Ave, 21-203 Thornton, CO 80233 (Amandablack27@ gmail.com). Copyright 2012 by The National Association of Neonatal Nurses. DOI:10.1097/ANC.0b013e3182425ad6
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mother may have a decrease in the negative emotions, such as stress, that often occur after a preterm birth.7,8
A REVIEW OF THE LITERATURE: EFFECTS ON PREMATURE INFANTS

A number of research studies suggest that breastfeeding is less physiologically stressful for premature infants than bottle-feeding.3-6 Physiologic stress can be defined by the effect of feeding on oxygen saturation, body temperature, and respiratory rate. If any of these values vary significantly from the normal range, the baby is considered to be under stress. Initial studies compared these different aspects among breastfed and bottle-fed premature infants. A preliminary study had 3 neonates serve as their own control. Each infant weighed less than 1500 g and was at least 35 weeks postconception age. The infants were monitored twice a week during a bottlefeeding session and a breastfeeding session. It was noted that the infants had some nipple confusion, as they would open their mouths very wide during a bottle-feed, which is needed for breastfeeding, and were unable to close their lips tightly around the nipple. This caused more air to pass into the babys stomach, which may have caused the noted increase in gagging and burping during bottle-feeding.4 One study focused on length of feeding times and found a major difference between bottle-feeding and breastfeeding. Breastfeeding sessions frequently lasted
Breastfeeding Preterm Infants
11
longer than 45 minutes; however, bottle-feeding sessions lasted around 15 to 20 minutes. The infants were better able to regulate the feeding, while at breast through nutritive sucking, pauses, and interactional time with the mother.5 The increase in time may be worrisome for health care professionals who are concerned that the infants temperature could become less stable during the time spent out of the incubator. However, skin-to-skin care during breastfeeding helps regulate body temperature during the increased time out of the incubator.6 Since the infant can control the feeding at breast, it may be a safer alternative. In one study, researchers found that on average, the infants studied had a greater increase in body temperature, fewer fluctuations in transcutaneous oxygen pressure, and longer durations of feeding when breastfeeding as opposed to bottle-feeding. It was suggested that the increased rate of milk flow during bottle-feeding could contribute to bradycardia and fluctuations in transcutaneous oxygen pressure, as milk flows more rapidly during bottle-feeding, giving infants less opportunity to rest when needed.5 Another study focused on measuring oxygen saturation while the infant was breastfed and bottle-fed. It was found that oxygen saturation was actually increased with breastfeeding, which may be due to the coordination of sucking, swallowing, and breathing. The only recorded instances of desaturations in this study occurred during bottle-feedings. It was suggested that when a preterm infant is deemed ready for nipple feeds that it is not necessary for them to attempt a bottle-feed before going to the breast.6 Furthermore, body temperature was shown to increase even beyond normal values for infants while breastfeeding.6,9 Researchers attributed the increase in temperature to the transfer of heat from the mothers breast to the babys face while feeding. Researchers proposed that mothers milk may have a higher temperature than bottled milk, which would help increase the infants core temperature as well.9 Overall it appears that high-risk infants have fewer instances of distress while breastfeeding than during bottle-feeding and that breastfeeding may actually be more beneficial to the high-risk neonate than bottle-feeding.
EFFECTS ON THE MOTHER PRETERM INFANT
OF THE
Some mothers feel very strongly that they will breastfeed or bottle-feed their new babies, although preterm birth is typically unexpected. New mothers may not have made a definitive decision on whether or not to breastfeed their preterm infants. It is very important for a new mother to make a decision quickly after delivery so that if breastfeeding is desired, then pumping can be started as soon as possible.10 Nurses should educate the new mother on the benefits of breast milk for her preterm infant.
Furthermore, if a mother is still debating on whether or not to partake in breastfeeding, it would be beneficial to initiate pumping right away. If the mother later decides that she does not want to breastfeed, she can stop pumping. It is important for nurses to educate the mother on the fact that if she does not initiate pumping soon after birth, she may lose her milk supply and will be unable to breastfeed her child if she chooses to at a later date. Maintaining an adequate milk supply can be quite difficult with a premature infant. The sooner after birth that the mother can initiate pumping, the more likely it is that she will have a good milk supply. She should begin pumping on a regular schedule every 2 to 3 hours, or at least 8 times in a 24-hour period and fully empty her breasts to maintain a good milk supply.11,12 Pumping for a longer duration also correlates with increased milk supply, which helps provide sufficient nutrition for the infant. The mother can pump both breasts simultaneously to help decrease the amount of time spent pumping.3 She should use a hospital-grade pump to increase efficacy of pumping because it mimics the feeding pattern of a term infant.11,12 A few things that play a big role in maintaining sufficient milk production include having a positive attitude toward pumping, balancing pumping with working, and managing the challenge of going to and from the hospital frequently.13 Immediately after preterm birth, a mother can have a myriad of emotions. A challenge in maintaining a good milk supply is the fact that women who give birth to preterm infants have higher levels of anxiety, stress, and fatigue. These particular emotions may affect lactation.3,14 Pumping and maintaining milk supply can also prove to be difficult for the mother when she does not have frequent stimulation from her new infant to help increase her lactation.15 In addition, following a preterm birth, the mother is at a much more vulnerable state and may not be able to internalize the instructions given about pumping and maintaining a milk supply. Frequent and ongoing lactation guidance and support can help the mother have a more positive outcome.16 One hospital trialed a program in which mothers of preterm infants were paired with another woman who had a similar birth experience. There were a group of mothers who had chosen to breastfeed their infants after delivering early, who were then brought back to the hospital and went through a training program to act as mentors for the new mothers. The new mothers found solace in the fact that other women had gone through a similar situation. The mentors were also able to provide support and education for the new mothers through their breastfeeding endeavors.17 The mentors appeared to have a very positive effect in breastfeeding success and could be a great supplemental tool in promoting breastfeeding of preterm infants.
12
Black
A primary concern for breastfeeding mothers is being able to quantify the amount of milk that their infant is receiving and whether it is sufficient to promote growth.15 This concern can be rectified by weighing the infant before and after feeding to measure the amount of milk consumption.3,14 One gram of weight gain is equal to 1 mL of milk intake so the infant should be weighed wearing the same articles of clothing both times.14 By doing weights, the mother can get an idea of how much milk her infant is receiving and it may help relieve some of her concern. Research shows that test weights can give an estimate of milk intake; however, the weights are not very precise, which may make it difficult to measure intake in a premature infant who drinks very small volumes of milk.18,19 One study suggested that it may be better to do daily weights to measure larger weight changes and ensure adequate nutritional intake.18 Furthermore, test weighing can help the mother and the nurse determine whether supplementation is needed when feeding the preterm infant to ensure that the baby is getting adequate nutrition.20 Research has also shown that some mothers feel an increased sense of confidence when test weights are performed.19 Health care professionals and mothers do not accurately estimate the amount of milk intake on the basis of the time spent breastfeeding or other clinical indicators, so some type of weighing whether daily or pre- and postfeed is important when precise measurement of intake is needed.19 There are benefits for the breastfeeding mother as well. A lactating mother may exhibit fewer feelings of anxiety and depression, as well as fewer mood swings due to the circulating hormones.7 Mothers tended to exhibit more positive emotions and reduced stress level after breastfeeding as compared with bottle-feeding.8 This can be a substantial benefit for mothers of preterm infants because there is such a wide spectrum of emotions after a preterm delivery.7 These feelings may cause lactation problems, but if the mother can work through the difficulties, she will experience the benefits. The skin-to-skin contact that is involved in breastfeeding can provide additional advantages for the mother. Typically it will make the mother feel much closer to her infant and she tends to perceive a much more intimate connection. The mother will usually have a much stronger attachment to her child than if she did not take part in skin-to-skin care.21,22 Breastfeeding provides good bonding time for the mother and her infant.23 In addition, a mother will feel more competent in doing care for her infant, particularly when skin-to-skin contact is initiated within 2 days after birth. It seems that the earlier skin-to-skin care or kangaroo care is started, the more comfortable and confident the mother feels in caring for her infant.22 The use of kangaroo care can also allow the mother to relax and not focus on whether or not each breastfeed is successful, but rather on the emotional fulfillment for both her and the infant.24
Furthermore, the mother feels more responsible as a care provider for her infant22 and exhibits higher self-esteem, happiness, and relaxation when practicing kangaroo care.21 Mothers felt an increased sense of control when able to participate in kangaroo care with their infants in the NICU since the nurses provide the majority of the care.23 This supported practice also helps mothers feel more confident in providing care when the baby finally goes home.21
EFFECTS
ON
NURSES
Lack of knowledge about breastfeeding premature infants can be an issue for NICU nurses. They may not have received education specifically on breastfeeding this specialized population. The difficulty the infant has with breastfeeding, coupled with multiple medical diagnoses, increases the challenge of breastfeeding. This can lead to the nurse presenting incorrect information to the mother and providing inadequate assistance that can inhibit successful breastfeeding.12 Nurses are providing direct care for the infants, but they also have to provide extensive support for the mother. The nurse has to focus much more on the mother-infant connection than solely on providing care for the infant and education for the mother as breastfeeding commences. This requires an increased time commitment for the nurse because she needs to attend to the mother and the infant during breastfeeding sessions, which can last substantially longer than bottle-feeding or gavage sessions.5 While the infant is in the NICU, the nurse is the primary caretaker. Consequently, the mother does not get the chance to actively care for the infant on a daily basis. She will often feel an added sense of control when she is finally able to breastfeed, and will begin to take more responsibility and be more assertive in her childs care. This can be difficult for the nurse in having to give up some of the control over the infants care25 because she cannot control the specific amount of milk the infant gets, nor the time spent feeding.
NURSING IMPLICATIONS
Nurses need to provide constant support for the new mothers and help them get through a difficult time. It is likely that breastfeeding rates for high-risk infants would improve with increased education for nurses about breastfeeding and how to better support mothers. It is important for nurses to know how to promote breastfeeding for the high-risk infants and what steps to take in order to help the mother be successful at breastfeeding. The nurse needs to be well informed about the benefits and challenges of breastfeeding a premature infant. The nurse should ensure that the mother fully understands the benefits and challenges so that she can make an informed decision. Advantages of providing breast milk and feeding at
Breastfeeding Preterm Infants
13
the breast should be included in the teaching. Even if a new mother decides not to breastfeed, she will still need immense support; the nurse needs to be there for her, no matter what she chooses to do.15 Something every nurse should be aware of is that there may be a lack of privacy for a breastfeeding mother. She may feel uncomfortable feeding in the NICU because of the number of people around. It is important to help facilitate privacy for mothers and help avoid distractions. Mothers who participated in one study described the NICU as being hectic, cramped, and stressful.26 The equipment, sick babies, and multiple parents in the unit made mothers feel much more awkward, especially while breastfeeding. Essentially all of the nurses in a particular unit need to be in agreement that the culture of the NICU will revolve around promoting breastfeeding so that all nurses can provide consistent support for mothers and ensure that the environment is conducive to promoting a good breastfeeding experience.26 The nurse must discuss breast pumping with a new mother who chooses to breastfeed, and help her develop a pumping schedule.12 The mother needs to pump breast milk from birth on, and while she is doing that the nurse should encourage her to keep a pumping log. The log should include the amount of milk from each breast and needs to note any changes in milk each time of pumping. It is important for the mother to record whether or not her breasts are being fully emptied. This helps the nurse monitor the milk supply and if any additional interventions need to be made in order to keep an adequate milk supply to support the infant.11 The nurse should also educate the mother that her preterm infant will not require a large amount of milk in the first few weeks of his life so she should not get discouraged if there is not ample milk being pumped each time. The first 1 to 2 weeks after birth is an essential time to establish a good milk supply12 so the mother needs to continue to fully empty both breasts. Kangaroo care is one of the first steps in initiating breastfeeding after the mother has made the decision to breastfeed. When the baby is stable, placing him skin to skin with his mother on a regular basis can provide benefits for the mother and the baby. Skinto-skin contact helps maintain physiologic aspects such as heart rate, temperature, and gas exchange, as well as decreases the number of apneic episodes the infant has. Kangaroo care has even shown other benefits including less severe infections, shorter hospital stay, and improved sleep cycles, and may have a correlation with higher daily weight gain.3,11 Advantages for the mother consist of increased lactation and improved milk supply as well as decreased maternal stress.27 Kangaroo care has a correlation with longer duration of breastfeeding as well as breastfeeding exclusivity,27 which is an advantage for both the mother and the child. If a nurse can encourage the
mother to participate in kangaroo care, then infant outcomes and breastfeeding success can be improved.11 Premature infants often have a difficult time sucking when they are born. They are commonly gavage fed through a nasogastric or orogastric tube, which allows the infant to get milk without having to suck and swallow. However, allowing the infant to do nonnutritive sucking can help develop facial muscles and can facilitate with feeding when the infant is finally ready to go to the breast.25 When the infant becomes more stable, the nurse can assist in beginning nonnutritive sucking at the breast. The mother and the nurse can work together to have nonnutritive sucking around feeding time so that the infant can be gavage fed while sucking on a previously emptied breast. Starting with nonnutritive sucking substantially increases the chance that the infant will have successful breastfeeding because he learns the feel of the breast and how to position his mouth.11 It has been shown that there are improved rates of breastfeeding for infants fed nasogastrically with nonnutritive sucking than for infants who were bottle-fed before initiating breastfeeding.20 The combination of skin-to-skin contact, nonnutritive sucking, and gavage feeding can help the infant associate feeling full and satisfied with the certain actions and positions that he is in, which will assist with breastfeeding.10 Following nonnutritive sucking, the nurse can slowly begin to have the infant breastfeed and do test weights before and after feedings to ensure adequate intake.11,15 When initially starting breastfeeding, the premature infant will have a poor or weak sucking reflex. This can be very discouraging and quite hard to handle for mothers; they will need additional support when beginning to do nutritive breastfeeding.15 Researchers agree that there is no specific age to initiate breastfeeding, but the infant must be physiologically stable and have adequate developmental maturity.3 It is optimal to have the first oral feeding at breast so that the infant begins to get used to the feel and mechanism of breastfeeding. After the first successful breastfeeding attempt, bottle-feeding can be used as supplemental feeding when the mother is not present to breastfeed.15 The preterm baby may begin to have nipple preference when feeding, because she learns that there is instant gratification with bottle-feeding as opposed to breastfeeding. If the mother plans to breastfeed, it is still suggested to have minimal bottle use with the infant.20 Another important aspect for successful breastfeeding includes collaboration between the nurse and the mother to figure out a feeding schedule so that the mother can be present for the majority of feedings. Mothers stated that it was devastating coming to the hospital and planning on having a breastfeeding session only to find that the nurse just finished feeding the baby through gavage or bottle.10
14
Black
Rooming in has shown to be a necessary practice when promoting successful breastfeeding. This is when the mother will stay at the hospital and fully participate in her new infants care. She will typically do all of the feedings so there would be ample opportunities for her to breastfeed and become more comfortable with the task before being discharged. The nurse needs to be available to provide additional support anytime there is a feeding while the mother is with her infant at the hospital.20 Nurses play a key role in assisting the mother with breastfeeding and maintaining successful feedings, while the infant is in the hospital. A group of mothers stated that active support and encouragement by the nurse are most helpful. When a nurse made a statement such as let me know if you need anything, mothers felt as though the nurse was not very helpful. When nurses asked more specific questions related to the feeding, the mother felt like they had a greater amount of support.10 The nurse needs to offer encouragement to the mother and be available to answer any questions as breastfeeding a premature infant can be quite difficult and disheartening at times. Mothers found it to be most helpful if the nurse was present for the entire breastfeeding session to continually offer advice, answer questions, and help with positioning the baby in the most optimal place for breastfeeding.10,28 One study found that the majority of maternal confidence with breastfeeding stemmed from and increased because of support by the nurse throughout the breastfeeding process.29 Mothers also wanted nurses to show a truly sincere desire to help them succeed in breastfeeding.10
References
1. Rodriguez N, Miracle D, Meier P. Sharing the science on human milk feedings with mothers of very-low-birth-weight infants. JOGNN J Obstetr Gynecol Neonatal Nurs. 2005;34(1):109-119. 2. What is an antibody? Bioresearch online. http://www.bioresearchonline.com/ article.mvc/What-Is-An-Antibody-0001. Published August 15, 2006. Accessed January 5, 2010. 3. Callen J, Pinelli J. A review of the literature examining the benefits and challenges, incidence and duration, and barriers to breastfeeding in preterm infants. Adv Neonatal Care. 2005;5(2):72-92. 4. Meier P, Pugh E. Breast feeding behavior of small preterm infants. MCN Am J Matern Child Nurs. 1985;10(6):396-401. 5. Meier P, Anderson G. Responses of small preterm infants to bottle- and breastfeeding. MCN Am J Matern Child Nurs. 1987;12(2):97-105. 6. Chen C, Wang T, Chang H, Chi C. The effect of breast- and bottle-feeding on oxygen saturation and body temperature in preterm infants. J Hum Lactat. 2000;16(1):21-27. 7. Merenstein G, Fardner S. Handbook of Neonatal Intensive Care. St Louis, MO: Mosby Inc; 2006. 8. Buckley K, Charles G. Benefits and challenges of transitioning preterm infants to at-breast feedings. Int Breastfeed J. 2006;1(13):1-7. 9. Meier P. Bottle- and breast-feeding: effects on transcutaneous oxygen pressure and temperature in preterm infants. Nurs Res. 1988;37(1):36-41. 10. Nye C. Transitioning premature infants from gavage to breast. Neonatal Netw. 2007;27(1):7-13. 11. Spatz D. Ten steps for promoting and protecting breastfeeding for vulnerable infants. J Perinat Neonatal Nurs. 2004;18(4):385-396. 12. Spatz D. Report of a staff program to promote and support breastfeeding in the care of vulnerable infants at a childrens hospital. J Perinat Educ. 2005;14(1):30-38. 13. Sisk P, Quandt S, Parson N, Tucker J. Breast milk expression and maintenance in mothers of very low birth weight infants: supports and barriers. J Hum Lactat. 2010;26(4):368-375. 14. Meier P, Brown L. State of the science: breastfeeding for mothers and low birth weight infants. Nurs Clin N Am. 1996;31(2):351-365. 15. McGrath J. Breast-feeding success for the high-risk infant and family: nursing attitudes and beliefs. J Perinat Neonatal Nurs. 2007;21(3):183-185. 16. Zanardo V, Gambina I, Trevisanuto D, et al. Psychological distress and early lactation performance in mothers of late preterm infants. Early Hum Dev. 2011;87(4):321-323. 17. Rossman B, Engstrom J, Meier P, Vonderheid S, Norr K, Hill P. Theyve walked in my shoes: mothers of very low birth weight infants and their experiences with breastfeeding peer counselors in the neonatal intensive care unit. J Hum Lactat. 2011;27(1):14-24. 18. Savenije O, Brand P. Accuracy and precision of test weighing to assess milk intake in newborn infants. Arch Dis Child Fetal Neonatal. 2006;91(3):F330-F332. 19. Funkquist E, Tuvemo T, Jonsson B, Serenius F, Nyqvist K. Influence of test weighing before/after nursing on breastfeeding in preterm infants. Adv Neonatal Care. 2010;10(1):33-39. 20. Nyqvist K. Breastfeeding support in neonatal care: an example of the integration of international evidence and experience. Newb Infant Nurs Rev. 2005;5(1):34-48. 21. Furman L, Kennell J. Breast milk and skin-to-skin kangaroo care for premature infants avoiding bonding failure. Acta Paediatr. 2000;89(1):1280-1283. 22. Tessier T, Cristo M, Velez S, et al. Kangaroo mother care and the bonding hypothesis. Pediatrics. 1998;102(2):1-8. 23. Kavanaugh K, Meier P, Zimmermann B, Mead L. The rewards outweigh the efforts: breastfeeding outcomes for mothers of preterm infants. J Hum Lactat. 1997;13(1):15-21. 24. Flacking R, Ewald U, Wallin L. Positive effect of kangaroo mother care on longterm breastfeeding in very preterm infants. JOGNN J Obstetr Gynecol Neonatal Nurs. 2011;40(2):190-197. 25. Kliethermes P, Cross M, Lanese M, Johnson K, Simon S. Transitioning preterm infants with nasogastric tube supplementation: increased likelihood of breastfeeding. JOGNN J Obstetr Gynecol Neonatal Nurs. 1999;28(3):264-273. 26. Nyqvist K, Per-Olow S. Advice concerning breastfeeding from mothers of infants admitted to a neonatal intensive care unit: the Roy Adaptation Model as a conceptual structure. J Adv Nurs. 1993;18:54-63. 27. Ahmed A, Sands L. Effect of pre- and postdischarge interventions on breastfeeding outcomes and weight gain among premature infants. JOGNN J Obstetr Gynecol Neonatal Nurs. 2010;39(1):53-63. 28. Meier P, Engstrom J, Mangurten H, Estrada E, Zimmerman B, Kopparthi R. Breastfeeding support services in the neonatal intensive-care unit. JOGNN J Obstetr Gynecol Neonatal Nurs. 1993;22(4):338-347. 29. Hall W, Shearer K, Mogan J, Berkowitz J. Weighing preterm infants before and after breastfeeding. Does it increase maternal confidence and competence? Am J Matern/Child Nurs. 2002;27(6):318-326.
SUMMARY
Overall breastfeeding has extensive benefits for both the preterm infant and the mother. Infants tend to be more physiologically stable while breastfeeding. The mother will typically have a greater attachment to her infant after breastfeeding and feel a better sense of confidence and responsibility with her baby. Mothers need to be fully educated on the benefits and challenges of breastfeeding their preterm infants so that they can make an informed decision on feeding method. Education for nurses would surely help improve the breastfeeding culture in the NICU. It can be challenging, but nurses need to focus on providing support, encouragement, and advice for struggling mothers through the entire process of initiating and maintaining breastfeeding.
KSENIA ZUKOWSKY, PHD, APRN, NNP-BC Section Editor
2.3
HOURS
Continuing Education
Efficacy of Inhaled Nitric Oxide in Preterm Neonates

Lauren E. Love, MSN, RN, CNS, NNP-BC; Wanda T. Bradshaw, MSN, RN, NNP-BC
ABSTRACT Over the past 20 years, the recognition of nitric oxide (NO) as an endothelial-derived vasodilator has led to remarkable advances in vascular biology awareness. The signaling molecule NO, produced by NO synthase, is a molecule that is widespread in the body and important in multiple organ systems. Soon after its discovery, investigators found NO to be a potent pulmonary vasodilator in term neonates. Nitric oxide has come to perform a key function in neonatal therapy and management since its identification, especially in those with respiratory failure. It is conventionally used in the neonatal population for the treatment of persistent pulmonary hypertension, resulting in hypoxic respiratory failure of the term or near-term newborn. Inhaled NO has been successful in acutely improving oxygenation and in reducing the need for extracorporeal membrane oxygenation treatment. In recent years, the efficacy of inhaled NO for the prevention of pulmonary disability as well as its neuroprotective capabilities in preterm infants has been explored. KEY WORDS: brain injury, bronchopulmonary dysplasia, inhaled nitric oxide, intraventricular hemorrhage, neuroprotection, periventricular leukomalacia, preterm infants, respiratory distress syndrome
n preterm infants, neonates less than 37 weeks gestation, with respiratory distress syndrome (RDS), poor ventilation-perfusion matching, and elevated pulmonary vascular resistance commonly present.1 Both pulmonary artery pressure and oxygenation have been thought to improve with inhaled nitric oxide (iNO) therapy. Preterm infants are at risk for bronchopulmonary dysplasia (BPD), a long-term pulmonary disability in neonates characterized by inflammation and scarring in the lungs due to mechanical ventilation. If the hypothesis that the use of iNO therapy reduces required ventilator support, then consequential lung injury will decline and the frequency of BPD will follow.2 Bronchopulmonary dysplasia is an extremely important chronic medical illness because it leads to arrested lung development
Author Affiliation: Duke University School of Nursing, Duke University Health System, Durham, North Carolina. Both authors have contributed equal substance to this work. There are no conflicts of interest. Correspondence: Lauren E. Love, MSN, RN, CNS, NNP-BC, Duke University School of Nursing, Duke University Health Care System, Durham, NC 27710 (lauren.love@duke.edu). Copyright 2012 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0b013e318242ddfc
in the neonate. It is a major cause of neonatal mortality and morbidity and is associated with neurodevelopmental impairment.3 In addition to pulmonary effects, endogenously produced nitric oxide (NO) in the brain offers neuroprotection by regulating local blood flow.4 The prospect of iNO therapy contributing to the secondary benefit of neuroprotection is also an exciting possibility. Increased permeability of the blood-brain barrier via the formation of free radicals such as peroxynitrites raised concern in previous studies.5,6 Variation of circulating neutrophils, monocytes, and platelets as they enter the lung are a few ways iNO offers neuroprotection.4 A strong relationship between brain injury and BPD or sepsis has been reported7 most likely because of the systemic inflammatory response and the release of cytokines into the circulatory system that probably play a role in brain injury. Studies have demonstrated that iNO minimizes oxidant stress by the downregulation of lung-derived cytokines.8,9 This breakthrough discovery may lead to a decline in brain injury. Inhaled NO enhances pulmonary angiogenesis, lung alveolarization, distal lung development, and pulmonary performance in preterm infants as several studies indicate.10 However, it still remains uncertain which subpopulations of infants might profit the most from iNO, given the inconclusive results of the clinical studies. There are also opposing data on whether exogenous NO is protective or destructive in the
15
16
Love and Bradshaw
presence of hyperoxia.10 Inhaled NO minimizes oxidant stress by the downregulation of lung-derived cytokines, suggesting a possible decline in brain injury.8,9 Hence, the purpose of this article is to determine the efficacy and safety of iNO therapy in preterm infants with severe RDS and respiratory failure along with its neuroprotectant factors. A literature review of all full-text, English language studies in PubMed, CINAHL, and the Cochrane Library between 2005 and 2010 was used.
MECHANISM
OF
ACTION
and inflammation, increased bronchodilation, and decreased airway smooth muscle proliferation.13 Ballard and colleagues14 discovered that iNO may, in fact, improve surfactant function briefly in infants weighing less than 1250 g receiving a lengthy course of iNO. No evidence of adverse effects is detected in iNO therapy outcomes on surfactant protein composition and recovery. The concern for possible development or progression of intraventricular hemorrhage (IVH) in the delicate premature brain must also be considered, given the consequences of iNO therapy on platelet function.15
In its inhaled form, NO causes relaxation of smooth muscles and vasodilation.11 This process is activated as iNO quickly diffuses from the alveolar space to the vascular smooth muscle cell, binding with and increasing cyclic guanosine monophosphate. This then triggers a surge of GMP-dependent protein kinases, resulting in an efflux of calcium from cells.11 These pulmonary effects caused by iNO help uphold normal vascular permeability and maintain low pulmonary arterial pressures. Inhaled NO helps decrease ventilation-perfusion mismatch and improve oxygenation because it restructures pulmonary blood flow as it is preferentially carried to ventilated areas of the lung.12 In a dose-dependent manner, NO systemically disrupts platelet and leukocyte functions, increasing and decreasing the inflammatory processes, and also increases urine output. But, these systemic vascular effects have demonstrated to be insignificant and iNO adverse effects are uncommon.12 Miller and Rhine12 describe iNO toxicity as the formation of methemoglobin, hemoglobin whose iron component is altered so that it does not carry oxygen well, nitric dioxide, a potent oxidant, and peroxynitrite, a powerful oxidant and proinflammatory mediator. Life-threatening adverse effects of acute withdrawal from iNO include rebound pulmonary hypertension and hypoxemia. Inhaled NO must be weaned slowly.
ANIMAL STUDIES
To better understand the various roles that iNO may have in the developing lung, animal studies were preformed. A study performed in a premature rat model with BPD demonstrated that iNO therapy prolonged survival, decreased fibrin deposition, enhanced alveolar growth by lessening septal thickness, and reduced the influx of leukocytes and capillary-alveolar leakage.16 Inhaled NOinduced downregulation of genes affecting inflammation, coagulation, fibrinolysis, and cell cycle regulation has been confirmed in mRNA testing as well as fibroblast growth factor receptor-4 upregulation. This type of fibroblast growth factor membrane receptor is involved in secondary septation and alveolar enlargement.16 Continuous, low-dose iNO therapy administered immediately after birth to a BPD lamb model for an extended 3-week course of mechanical ventilation showed significantly decreased airway resistance, less airway smooth muscle growth, and greater alveolarization but detected no variance in pulmonary vascular resistance.17 This study revealed iNO augments alveolar development, while preserving composition and function of airway smooth muscle. Premature infants with BPD can be greatly influenced by both of these actions. McCurnin and colleagues18 performed a study in a baboon model of BPD. At the end of the study, these researchers observed that beginning iNO in premature baboons within 1 hour of life and sustaining it for 14 days resulted in decreased pulmonary artery pressure, larger incidence of spontaneous closure of the ductus arteriosus, better lung compliance and expiratory resistance, and increased lung DNA content and cell proliferation, and maintained lung growth. Possible modification of alveolarization by iNO was suggested in the study as the excessive elastin was normalized and secondary neural crest cell development was present.18
BACKGROUND
In the term and late preterm infants, iNO has been used for the treatment of persistent pulmonary hypertension with hypoxic respiratory failure.11 In preterm infants with respiratory failure secondary to RDS and other pulmonary diseases, it was considered for use soon thereafter. According to Miller and Rhine,12 RDS seen in prematurity is linked with postponed postnatal circulatory adaptation characterized by pulmonary hypertension, systemic hypotension, and prolonged ductus arteriosus patency. Martin and Walsh13 proposed that iNO may have several effects on the developing lung parenchyma, bronchi, and vasculature between 25 and 28 weeks gestation. Proposed effects include increased growth and surfactant function with decreased elastin production
HUMAN STUDIES
A Cochrane meta-analysis of all randomized and quasi-randomized studies in preterm babies with
17
respiratory disease has been published comparing the administration effects of iNO on a control group, with and without placebo gas.2 Although the preferred approach to evaluate the value of a given treatment is a meta-analysis, the differing characteristics of all the trials are a limiting factor to its usefulness.19 There is a wide spectrum of studies regarding iNO use in the preterm neonate ranging from rescue therapy of hypoxic respiratory failure because of persistent pulmonary hypertension of the newborn or severe BPD to a prophylactic use in order to prevent BPD.2 The trials to date can be grouped into 3 different categories, depending on the entry criteria for iNO use: initiation within the first 3 days of life based on oxygen criteria, also termed as rescue therapy, routine use in preterm intubated patients, or later enrollment based on an increased risk for BPD (see Table 1). The multicenter study headed by Van Meurs et al15 randomly assigned neonates less than 34 weeks gestation, with a birth weight of 401 to 1500 g, and with
respiratory failure more than 4 hours after treatment with surfactant to iNO at 5 to 10 parts per million (ppm) or placebo gas. The incidence of death or BPD was 80% in the iNO-treated group compared with 82% in the placebo group, and the rate of BPD alone was 60% in the iNO-treated group versus 68% in the placebo group. Death and BPD rates were reduced for infants with birth weights greater than 1000 g without an increase in the rate of IVH as suggested in the post hoc analyses, whereas infants who were treated with iNO and weighed 1000 g or less had a higher mortality and increased rate of severe intracranial hemorrhage.15 At the recommendation of the data safety and monitoring committee, the study was terminated early as the frequency of severe IVH or periventricular leukomalacia (PVL) appeared to be significantly greater in the treatment group with no benefit on the primary outcome of reducing rates of BPD or death.12 This difference was not statistically significant at the end of the trial.
TABLE 1. Comparison Inhaled NO Compared to Control, Outcome Death, or Bronchopulmonary Dysplasia at 36 Wka
Study or Subgroup Treatment (n/N) Control (n/N)
P Relative Risk [95% CI]
Studies with entry before 3 d based on oxygenationb Franco-Belgium Collaborative NO Trial Group 199925 Hascoet et al 200526 Van Meurs et al15 Dani et al 200627 Field et al 200528 Kinsella et al 1999 Su and Chen 2007 Subtotal (95% CI) Studies with entry after 3 d based on BPD risk Ballard et al14 Subhedar and Shaw 1997 Subtotal (95% CI) Studies of routine use in intubated preterm infants Kinsella et al20 Schreiber et al 200333 Mercier et al 2009 Subtotal (95% CI)
34 d 32 c 29 30
18/40 33/57 167/210 10/20 49/55 37/48 16/32 7/14 476 165/294 20/20 314 282/398 51/105 139/401 904
24/45 41/74 168/210 18/20 48/53 29/32 21/33 9/15 482 182/288 21/22 310 295/395 65/102 141/399 896
0.84 [0.54-1.31] 1.04 [0.77-1.41] 0.99 [0.90-1.09] 0.56 [0.35-0.88] 0.98 [0.87-1.12] 0.85 [0.70-1.03] 0.79 [0.51-1.21] 0.83 [0.43-1.62] 0.94 [0.87-1.01] 0.89 [0.78-1.02] 1.04 [0.92-1.19] 0.90 [0.80-1.02] 0.95 [0.87-1.03] 0.76 [0.60-0.97] 0.98 [0.81-1.18] 0.93 [0.86-1.01]
Van Meurs et al 200731
Abbreviation: CI, confidence interval; NO, nitric oxide. aReview: Inhaled nitric oxide for respiratory failure in preterm infants. Comparison: Inhaled nitric oxide compared to control. Outcome: Death or bronchopulmonary dysplasia at 36 wk. bTotal events: 337 (treatment), 358 (control). Heterogeneity: 2 9.43, df 7 (P .22); I 26%. Test for overall effect: Z 1.73 (P .084). 2 cTotal events: 185 (treatment), 203 (control). Heterogeneity: 2 5.04, df 1 (P .02); I 80%. Test for overall effect: Z 1.65 (P .099). 2 dTotal events: 472 (treatment), 501 (control). Heterogeneity: 2 3.03, df 2 (P .22); I 34%. Test for overall effect: Z 1.70 (P .090). 2

18
Love and Bradshaw
Eleven rescue treatment trials were compared in the Cochrane meta-analysis.2 The results of the meta-analysis of this subgroup showed identical findings to the study by Van Meurs et al.15 The analysis showed no significant effect on survival to discharge, death prior to 36 weeks postmenstrual age, incidence of BPD, combined outcome of death or BPD, or overall IVH frequency. Although the effect was not significant upon conclusion, the studies showed a movement toward increased incidence of severe IVH, defined as grades 3 and 4, and in PVL as well. Moreover, improvement in oxygenation was noted within 2 hours of the iNO therapy initiation by multiple studies.2 Within the past 5 years, only 1 study has been done regarding the routine use of iNO in preterm infants. The study by Kinsella and colleagues20 enrolled newborns who were 34 weeks gestational age or less and had respiratory failure requiring mechanical ventilation. Newborns were randomly assigned to receive either iNO (5 ppm) or placebo gas for 21 days or until extubation, with stratification according to birth weight (500 to 749 g, 750 to 999 g, or 1000 to 1250 g). A composite of death or BPD at 36 weeks postmenstrual age was the primary efficacy outcome. Intracranial hemorrhage, PVL, and ventriculomegaly were secondary safety outcomes of the study. The incidence of death or BPD between patients receiving iNO and those receiving placebo
showed no significant difference (71.6% vs 75.3%, p .24). However, when comparing treatment and placebo in infants weighing between 1000 and 1250 g at birth, iNO therapy showed a reduction in the incidence of BPD (29.8% vs 59.6%, p .001). Inhaled NO treatment did reduce the combined end point of intracranial hemorrhage, PVL, or ventriculomegaly (17.5% vs 23.9%, p .03) and of PVL alone (5.2% vs 9.0%, p .048). Overall, low-dose iNO did not reduce the incidence of BPD among premature infants with respiratory failure, except among infants with a birth weight of at least 1000 g, but it did reduce the overall chance of brain injury20 (see Table 2). The final category of the later enrollment based on BPD-risk subgroup defines Ballard and colleagues14 study. The trial was a multicenter, randomized, stratified, double-blind, placebo-controlled trial of iNO involving infants with a birth weight of 1250 g or less requiring ventilator support between 7 and 21 days of age. For a minimum of 24 days, treated infants received decreasing concentrations of NO. Survival without BPD at 36 weeks postmenstrual age was the primary outcome of the study. The rate of survival without BPD at 36 weeks postmenstrual age was 43.9% in the group receiving NO and 36.8% in the placebo group (p .042). The infants who were treated with iNO received supplemental oxygen therapy for a shorter time ( p .006) and were
TABLE 2. Incidence of Death or Bronchopulmonary Dysplasia at 36 wk of Postmenstrual Age

Variable Risk All patients Death Bronchopulmonary dysplasia Death or bronchopulmonary dysplasia Birth weight of 500749 g Death Bronchopulmonary dysplasia Death or bronchopulmonary dysplasia Birth weight of 750999 g Death Bronchopulmonary dysplasia Death or bronchopulmonary dysplasia Birth weight of 10001250 g Death Bronchopulmonary dysplasia Death or bronchopulmonary dysplasia
Abbreviation: CI, confidence interval.
Inhaled Nitric Oxide (N 398), n/N (%)
Placebo (N 395), n/N (%)
P Relative (95% CI)
78/394 (19.8) 212/326 (65.0) 282/394 (71.6) 55/191 (28.8) 113/144 (78.5) 162/191 (84.8) 15/138 (10.9) 82/125 (65.6) 95/138 (68.8) 8/65 (12.3) 17/57 (29.8) 25/65 (38.5)
98/392 (25.0) 0.08 210/309 (68.0) 0.43 295/392 (75.3) 0.24 66/189 (34.9) 0.20 100/132 (75.8) 0.59 159/189 (84.1) 0.85 24/139 (17.3) 0.13 76/120 (63.3) 0.71 95/139 (68.3) 0.93 8/64 (12.5) 0.97 34/57 (59.6) 0.001 41/64 (64.1) 0.004
0.79 (0.611.03) 0.96 (0.861.09) 0.95 (0.871.03) 0.82 (0.611.11) 1.04 (0.911.18) 1.01 (0.921.10) 0.63 (0.351.15) 1.04 (0.861.25) 1.01 (0.861.18) 0.98 (0.392.46) 0.50 (0.320.79) 0.60 (0.420.86)
19
discharged sooner ( p .04). The study confirmed that iNO therapy in premature infants improves the pulmonary outcome for those who are at risk for BPD when it is initiated between 7 and 21 days of age and has no evident short-term adverse effects.14
NEURODEVELOPMENTAL OUTCOMES
Preterm infants are at a high risk for neurodevelopmental impairment, including blindness, deafness, cerebral palsy, and global cognitive delay,21 as well as more subtle cognitive deficits, such as language delay, learning disabilities, and attention and executive function abnormalities.4 Little progress has been made in developing treatments or creating preventative measures, despite an increasing awareness of the risk factors leading to abnormal neurodevelopmental outcomes. The impact of iNO remains controversial in regard to the development of the central nervous system. In past studies, an increase was noted in the incidence of intracranial hemorrhage in critically ill preterm neonates receiving iNO therapy.15 Nitric oxide was demonstrated to increase bleeding time and inhibit platelet aggregation in many initial iNO trials.19 Although a trend for an increased incidence of severe IVH or PVL was noted in early rescue studies, there was no significant difference between control and iNO groups.4 The varied entry criteria, lack of cranial ultrasound scans before study entry, short duration of iNO treatment, and more critically ill babies being enrolled in these trials are examples of the limitations to analyses of the results. In comparison with the early rescue trials, the early prophylactic trials showed a reduction of neurological injury while the late therapy trials showed no progression of this outcome. The study by Mestan and colleagues22 noted a momentous decrease in the composite outcome of neurodevelopmental disability, defined as cerebral palsy, bilateral blindness, bilateral hearing loss, and greater than 2 SD lower than the mean of Bayley scores of infant development. There were more mature and fewer critically ill neonates in this singlecenter study who were not at high risk for this outcome. Nevertheless, this is the first trial to date to report 2-year follow-up of iNO therapy outcomes on neurodevelopmental status giving reassurance of no potential harm with iNO in this patient population. The results of the Neonatal Ventilation With Inhaled Nitric Oxide Versus Ventilatory Support Without Inhaled Nitric Oxide for Preterm Infants With Severe Respiratory Failure study, also known as the INNOVO trial for short, by Huddy et al23 were still pending when the results of the Mestan et al22 study were released. When the INNOVO study was published, its investigators reported the rates of major disability from iNO therapy given to ventilated premature infants at 1 year of age weighing less than 1250 g, which
showed no difference between the groups. Severe disability was defined as no/minimal head control or inability to sit unsupported or no/minimal responses to visual stimuli. There was no difference between the groups (7 of the 55 patients who received iNO therapy vs 2 of the 53 patients who did not receive iNO therapy could not sit unsupported at 1 year). The most recent study to date by Walsh and colleagues24 reported follow-up neurodevelopmental outcomes at 2 years of age in ventilated preterm infants treated with iNO. The study concluded that exposure to 24 days of iNO treatment initiated at 20 ppm between 7 and 21 days in ventilated preterm infants is both safe and effective, with improved survival free of BPD and no adverse effects on growth or neurodevelopmental status at 2 years of age.24
CONCLUSION
Despite the thousands of babies being enrolled in iNO trials, there are still questions to be answered about clinical management of iNO in preterm newborns. The available data for the use of iNO in the management of preterm neonates suggest that a beneficial effect depends on the patient population, duration of therapy, and underlying pathological condition.4 The early and late uses of iNO in the management of preterm neonates cannot be recommended until BPD results and long-term neurodevelopmental follow-up data show consistent, beneficial findings. The use of iNO as rescue therapy for infants weighing less than 1 kg is confounded by a patient population at high risk for an adverse neurological outcome. Although endogenous NO is important for lung growth, there is little evidence that an exogenous supply of NO achieves that goal. Only in a small population of infants weighing between 1000 and 1250 g at birth did iNO therapy in one study show a reduction in the incidence of BPD.20 The potential role of iNO needs to be further defined and the abundant laboratory evidence needs to be translated to beneficial clinical outcomes before it can be used by health care providers as a standard of care.
References
1. Su PH, Chen JY. Inhaled nitric oxide in the management of preterm infants with severe respiratory failure. J Perinatol. 2008;28(2):112-116. doi:10.1038/sj.jp.7211881 2. Barringtion KJ, Finer NN. Inhaled nitric oxide for respiratory failure in preterm infants. Cochrane Database Syst Rev. 2007;(3):CD000509. doi:10.1002/14651858. CD000509.pub3. 3. Vohr BR, Wright LL, Poole WK, et al. Neurodevelopmental outcomes of extremely low birth weight infants 32 weeks gestation between 1993 and 1998. Pediatrics. 2005;116(3):635-643. doi:10.1542/peds.2004-2247 4. Arul N, Konduri GG. Inhaled nitric oxide for preterm neonates. Clin Perinatol. 2009;36(1):43-61. doi:10.1016/j.clp.2008.09.002 5. Martin RJ. Nitric oxide for preemiesnot so fast. N Engl J Med. 2003;349(22):2157-2159. 6. Mayhan WG. Nitric oxide donorinduced increase in permeability of the blood-brain barrier. Brain Res. 2000;866(1/2):101-108. doi:10.1016/S0006-8993(00)02254-X 7. Viscardi RM, Muhumuza CK, Rodriguez A, et al. Inflammatory markers in intrauterine and fetal blood and cerebrospinal fluid compartments are associated with adverse pulmonary and neurologic outcomes in preterm infants. Pediatr Res 2004;55:1009-1017. doi:00313998/04/5506-1009 8. Haynes RL, Baud O, Li J, et al. Oxidative and nitrative injury in periventricular leukomalacia: a review. Brain Pathol. 2005;15:225233. doi:10.1111/j.17503639.2005.tb00525.x
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without nitric oxide for severe respiratory failure in preterm infants: Follow up at 45 years. Arch Dis Child Fetal Neonatal Ed. 2008;93(6):F430-F435. doi:10.1136/ adc.2007.129353 Walsh MC, Hibbs AM, Martin CR, et al. Two-year neurodevelopmental outcomes of ventilated preterm infants treated with inhaled nitric oxide. J Pediatr. 2010;156(4):556.e1-561.e1. doi:10.1016/j.jpeds.2009.10.011 Franco-Belgium Collaborative NO Trial Group. Early compared with delayed inhaled nitric oxide in moderately hypoxaemic neonates with respiratory failure: a randomized controlled trial. Lancet. 1999;354:10661071. doi:10.1016/ S01406736(99)03309-7 Hascoet JM, Fresson J, Claris O, Hamon I, Lombet J, Liska A, et al. The safety and efficacy of nitric oxide therapy in premature infants. J Pediatr. 2005;146:318323. doi:10.1016/j.jpeds.2004.10.019 Dani C, Bertini G, Pezzati M, Filippi L, Cecchi A, Rubaltelli FF. Inhaled nitric oxide in very preterm infants with severe respiratory distress syndrome. Acta Paediatr. 2006;95:11161123. doi: 10.1080/08035250600702594 Field D, Elbourne D, Truesdale A, Grieve R, Hardy P, Fenton AC, et al. Neonatal ventilation with inhaled nitric oxide versus ventilatory support without inhaled nitric oxide for preterm infants with severe respiratory failure: the INNOVO multicentre randomized controlled trial (ISRCTN 17821339). Pediatr. 2005;115:926936. doi: 10.1542/peds.2004-1209 Kinsella JP, Walsh WF, Bose CL, Gerstmann DR, Labella JJ, Sardesai S. Inhaled nitric oxide in premature neonates with severe hypoxaemic respiratory failure: a randomized controlled trial. Lancet. 1999;354:10611065. doi:10.1016/S01406736(99)03558-8 Su PH, Chen JY. Inhaled nitric oxide in the management of preterm infants with severe respiratory failure. J Perinatol. 2008;28:112116. doi:10.1038/sj.jp.7211881 Van Meurs KP, Hintz SR, Ehrenkranz RA, Lemons JA, Ball MB, Poole WK, et al. Inhaled nitric oxide in infants 1500 g and 34 weeks gestation with severe respiratory failure. J Perinatol. 2007;27:347352. doi:10.1038/sj.jp.7211690 Subhedar NV, Shaw NJ. Changes in oxygenation and pulmonary haemodynamics in preterm infants treated with inhaled nitric oxide. Arch Dis Child Fetal Neonatal Ed. 1997;77:F191F197. doi:10.1136/fn.77.3.F191 Schreiber MD, Gin-Mestan K, Marks JD, Huo D, Lee G, Srisuparp P. Inhaled nitric oxide in premature infants with the respiratory distress syndrome. N Engl J Med. 2003;349:20992107. Mercier JC, Hummler H, Durrmeyer X, Sanchez-Luna M, Carnielli V, Field D, et al. Inhaled nitric oxide for the prevention of bronchopulmonary dysplasia in premature babies (EUNO): a randomized controlled trial. Lancet. 2010;376:346354. doi:10.1016/S0140-6736(10)60664-2
9. Aaltonen M, Soukka H, Halkola L, et al. Inhaled nitric oxide treatment inhibits neuronal injury after meconium aspiration in piglets. Early Hum Dev. 2007;83:7785. doi:10.1016/j.earlhumdev.2006.05.003 10. Rieger-Fackeldey E, Hentschel R. Bronchopulmonary dysplasia and early prophylactic inhaled nitric oxide in preterm infants: current concepts and future research strategies in animal models. J Perinat Med. 2008;36(5):442-447. doi:10.1515/JPM.2008.065 11. Soll RF. Inhaled nitric oxide in the neonate. J Perinatol. 2009;29(suppl 2):S63S67. doi:10.1038/jp.2009.40 12. Miller SS, Rhine DW. Inhaled nitric oxide in the treatment of preterm infants. Early Hum Dev. 2008;84(11):703-707. doi:10.1016/j.earlhumdev.2008.08.005 13. Martin RJ, Walsh MC. Inhaled nitric oxide for preterm infantswho benefits? N Engl J Med. 2005;353(1):82-84. 14. Ballard RA, Truog WE, Cnaan A, et al. Inhaled nitric oxide in preterm infants undergoing mechanical ventilation. N Engl J Med. 2006;355(4):343-353. 15. Van Meurs KP, Wright LL, Ekrenkranz RA, et al. Inhaled nitric oxide for premature infants with severe respiratory failure. N Engl J Med. 2005;353(1):13-22. 16. ter Horst SAJ, Walther FJ, Poorthuis BJHM, et al. Inhaled nitric oxide attenuates pulmonary inflammation and fibrin deposition and prolongs survival in neonatal hyperoxic lung injury. Am J Physiol Lung Cell Mol Physiol. 2007;293(1):L35-L44. doi:10.1152/ajplung.00381.2006 17. Bland RD, Albertine KH, Carlton DP, et al. Inhaled nitric oxide effects on lung structure and function in chronically ventilated preterm lambs. Am J Respir Crit Care Med. 2005;172(7):899-906. doi:10.1164/rccm.200503-384OC 18. McCurnin DC, Pierce RA, Chang LY, et al. Inhaled NO improves early pulmonary function and modifies lung growth and elastin deposition in a baboon model of neonatal chronic lung disease. Am J Physiol Lung Cell Mol Physiol. 2005;288(3):L450-L459. doi:10.1152/ajplung.00347.2004 19. Mercier JC, Olivier P, Loron G, et al. Inhaled nitric oxide to prevent bronchopulmonary dysplasia in preterm neonates. Semin Fetal Neonatal Med. 2009;14(1):28-34. doi:10.1016/j.siny.2008.08.009 20. Kinsella JP, Cutter GR, Walsh WF, et al. Early inhaled nitric oxide therapy in premature newborns with respiratory failure. N Engl J Med. 2006;355(4):354-364. doi:10.1056/NEJMoa060442 21. Marks JD, Schreiber MD. Inhaled nitric oxide and neuroprotection in preterm infants. Clin Perinatol. 2008;35(4):793-807, viii. doi:10.1016/j.clp.2008.07.015 22. Mestan KK, Marks JD, Hecox K, Huo D, Schreiber MD. Neurodevelopmental outcomes of premature infants treated with inhaled nitric oxide. N Engl J Med. 2005;353(1):23-32. 23. Huddy CL, Bennett CC, Hardy P, et al. The INNOVO multicentre randomized controlled trial: Neonatal ventilation with inhaled nitric oxide versus ventilator support
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DOI: 10.1097/ANC.0b013e318245f261
CE TEST QUESTIONS
GENERAL PURPOSE: To provide registered professional nurses with an
understanding of the efficacy and safety of inhaled nitrous oxide (iNO) therapy in preterm infants with severe respiratory distress syndrome (RDS) and respiratory failure.
LEARNING OBJECTIVES: After reading this article and taking this test,
6. Inhaled NO toxicity includes a. altered surfactant protein composition. b. methemoglobinemia. c. rebound pulmonary hypotension. d. impaired surfactant function. 7. What is RDS in prematurity linked to? a. pulmonary hypotension b. spontaneous ductus arteriosus closure c. systemic hypertension d. postponed postnatal circulatory adaptation 8. In the 2005 study by McCurnin et al., iNO therapy for premature baboons caused a. increased pulmonary artery pressure. b. prolonged ductus arteriosus patency. c. better lung compliance. d. decreased lung DNA content. 9. Death rates in the Van Meurs et al. (2005) study were reduced for infants a. who received iNO less than 4 hours after birth. b. with birth weights 1000 Gm. c. who received placebo gas. d. 34 weeks gestation. 10. In the rescue treatment trials in the 2007 Cochrane meta-analysis, there was a movement towards increased a. incidence of periventricular leukomalacia (PVL). b. survival to discharge. c. incidence of death before 36 weeks postmenstrual age. d. incidence of BPD. 11. What did the results of the study by Kinsella et al. (2006) reveal? a. reduced incidence of PVL b. higher incidence of BPD in the iNO group c. lower incidence of death in the iNO group d. higher incidence of intracranial hemorrhage in the iNO group 12. In the Kinsella study, iNO therapy resulted in significantly less BPD in infants with a birth weight of a. < 300 Gm. b. 350-449 Gm. c. 750-800 Gm. d. 1000-1250 Gm.
you should be able to: 1. Define the pathology of RDS and the physiological effects of iNO. 2. Outline the effects of iNO on infants' neurodevelopmental status. 3. Review the results of studies demonstrating the efficacy of iNO.
1. As noted in the article, nitric oxide is used conventionally to treat neonates with a. recurrent lower respiratory tract infections. b. left ventricular failure. c. persistent pulmonary hypertension. d. upper respiratory tract infections. 2. What is bronchopulmonary dysplasia characterized by? a. bronchial wall thinning b. mucous gland hyperplasia c. focal squamous metaplasia d. inflammation in the lungs 3. Inhaled NO offers neuroprotective effects by variation of a. hemoglobin. b. monocytes. c. mean corpuscular volume. d. hematocrit. 4. Studies indicate that iNO enhances all of the following except a. pulmonary angiogenesis. b. distal lung development. c. immune-mediated responses. d. lung alveolarization. 5. Inhaled NO causes a. relaxation of smooth muscles. b. increased pulmonary artery pressure. c. vasoconstriction. d. increased vascular permeability.
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13. In the study by Ballard et al. (2006), iNO improved pulmonary function when started between how many days of age? a. 0-3 days of age b. 4-6 days of age c. 7-21 days of age d. 21-35 days of age 14. Inhaled NO therapy results in significant a. increases in severe intraventricular hemorrhages. b. inhibition of platelet aggregation. c. increases in rates of PVL. d. decreases in bleeding time. 15. Studies have demonstrated a reduction of neurological injury with iNO therapy in which of the following trials? a. early prophylactic trials b. early rescue trials c. late therapy trials d. late rescue trials
16. Use of iNO in the study by Mestan et al. (2005) revealed a decrease in all of the following except a. cerebral palsy. b. bilateral blindness. c. motor functioning. d. bilateral hearing loss. 17. In the Mestan study, the infants were generally more a. premature. b. critically ill. c. at risk for disability. d. mature. 18. What did the results of the INNOVO trial (2008) reveal that iNO therapy resulted in? a. improved head control in the iNO group b. the ability to sit unsupported in the iNO group c. minimal responses to visual stimuli in the untreated group d. no difference between infants in the iNO therapy and control groups
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PAMELA HEABERLIN, MS, NNP-BC Section Editor
Carnitine Palmitoyltransferase-1A Deficiency

A Look at Classic and Arctic Variants
Deanna M. Dykema, MS, NNP-BC
ABSTRACT Carnitine palmitoyltransferase-1A (CPT-1A) deficiency is a defect of fatty acid metabolism that presents as an autosomal recessive inheritance. Carnitine palmitoyltransferase-1A is the rate-limiting enzyme that allows the body to process fats to provide energy during times of fasting and illness. Patients usually present between birth and 18 months of age following an illness with various symptoms including hypoketotic hypoglycemia, lethargy, and seizures. Diagnosis can be achieved through newborn metabolic screening. Long-term treatment is managed through dietary management. A milder form has been found to occur at a much higher incidence in the Inuit population. Since the recent discovery of CPT-1A deficiency, much is yet to be learned. Researchers are busy identifying and studying groups of people who are presenting with CPT-1A deficiency at significantly higher rates than the general population. This research will lead to a better understanding and future care of individuals diagnosed with CPT-1A deficiency. KEY WORDS: arctic variant, autosomal recessive disorder, CPT-1, CPT-1A deficiency, fatty acid metabolism, hypoketotic hypoglycemia
he classic form of carnitine palmitoyltransferase-1A (CPT-1A) deficiency is a rare defect of fatty acid metabolism that presents as an autosomal recessive inheritance. Carnitine palmitoyltransferase-1A deficiency was first identified in 1981 by Bougneres and colleagues.1 Since the recent discovery of CPT-1A deficiency, much is yet to be learned. Researchers are busy identifying and studying groups of people who present with a variant form of CPT-1A deficiency at significantly higher rates than the general population.
ETIOLOGY
AND
PATHOGENESIS
Carnitine palmitoyltransferase-1A is classified as a fatty acid oxidation defect. The gene for CPT-1 is found on chromosome 11q13.2-4 The exact location
Author Affiliation: Children's Hospital Colarado, Aurora. The author declares no conflict of interest. Correspondence: Deanna M. Dykema, MS, NNP-BC, Children's Hospital Colorado, 13123 E 16th Ave, B535, Aurora, CO 80045 (deanna.dykema@childrenscolorado.org). Copyright 2012 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0b013e318242df6d
is between positions 13.1 and 13.2.3 There are various pathologic allelic variations in the CPT-1 gene. The majority of the variations identified in individuals are private mutations, including missense, nonsense, insertion, and deletion mutations.2 There are specific mutations identified in both the Hutterite and the Inuit populations.2,5 The variant mutation found in the Inuit population has been identified as a missense mutation that causes the proline at position 479 to be changed to a leucine (P479L). This amino acid change corresponds to a DNA change from cytosine (C) to thymine (T) at the nucleotide 1436. Inuit patients who present with CPT-1A deficiency are found to be homozygous c.1436T.5 The ancient Inuit lifestyle has been hypothesized as a positive selection that resulted in the sequence variant of the Inuit people. This mutation may be explained by the traditional diet high in fat and protein, providing a perpetual state of ketosis to survive the harsh environment. The P479L variant is possibly an adaptation to the perpetual ketosis necessary to survive the harsh environment in which the Inuit people reside.5 The P479L variant is often referred to as the arctic variant of CPT-1A deficiency. Carnitine palmitoyltransferase-1A is an enzyme that is on the outer mitochondrial membrane. The purpose of CPT-1 is to convert long-chain fatty acyl
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Dykema
molecules into acylcarnitines. Once this conversion into acylcarnitine has occurred, the acylcarnitine is transported across the inner mitochondrial membrane by carnitine acylcarnitine translocase into the mitochondrial matrix. Once inside, acylcarnitine is reconverted back into long-chain fatty acyl molecule by the CPT-2 enzyme so that -oxidation can occur. The -oxidation and production of ketones in the liver are an alternative fuel source when glycogen stores are depleted because of fasting or illness. This process allows for metabolism to take place in peripheral tissues that are unable to oxidize fatty acids but rely on the ketogenesis for fuel. Malonyl-CoA regulates the highly allosteric CPT-1 enzyme at the cellular level. Postprandially, malonyl-CoA levels rise and they then fall during fasting. When malonyl-CoA levels are high, CPT-1 activity is inhibited and thus there is impaired transport of fatty acids into the mitochondrion. During times of fasting, the malonyl-CoA levels are low and CPT-1 activity is no longer inhibited so fatty acids are transported into the mitochondrion. Carnitine palmitoyltransferase-1A is specific to the liver isoform of CPT-1 and is the only CPT-1 gene in humans to be found deficient.4,5 The individual who has CPT-1A deficiency does not tolerate fasting since there is not enough enzyme activity to allow for the utilization of fats for energy when glucose stores drop, especially during periods of stress.2,4 The end result is a state of hypoglycemia in the body as the glucose stores are used up.6 The arctic variant specific mutation of P479L has been documented to occur in the Inuit populations of Alaska, Canada, and Greenland.5,7 Research of this mutation in the Inuit and First Nations ancestry in Canada by Greenberg studied 7 children from 3 families along with 32 other family members.5 The original 7 children studied were all diagnosed with CPT1A deficiency with the P479L amino acid substitution. The remaining 32 family members who were tested, as a result of the original 7 diagnosed, revealed 27 members to be homozygous for the CPT-1A P479L variant and the remaining 5 family members were heterozygous carriers. Additional studies were done on 422 consecutive newborns in 8 communities in the Nunavut region; of those, 294 were homozygous for P479L and 103 were heterozygous. Since that time, 7 infants who were homozygous have died and 3 who were heterozygous have died. Overall, the Inuit infant death rate remains 3 times that of the overall Canadian infant death rate. Current studies of the possible correlation between the P479L variant and infant death rates are being conducted.5 The state of Alaska began the expanded newborn screen in 2003. During the time period of October 2003 to August 2008, 129 affected infants have been identified and are all of Alaska Native descent. The affected infants have all been identified with the same P479L variant as identified in the Inuit people of
Canada.5 These identified infants give an incidence of 1.3/1000 live births in Alaska and 5.3/1000 live births in the Alaska Native population.8
CLINICAL PRESENTATION
The usual presentation of classic CPT-1A deficiency is from birth to 18 months of age.2 Presentation with the arctic variant is often asymptomatic.5 Patients will present with a variety of symptoms. Infants may present with hypoglycemia of the newborn. Children who do not present in the newborn period usually present with lethargy and seizures induced by fasting. Presentation in some cases has been fatal.2 Some of these symptoms include altered mental status, hepatomegaly, seizures, coma, vomiting, diarrhea, and fever.4,6,8 Laboratory tests may show hypoketotic hypoglycemia, hyperammonemia, elevated liver function tests, elevated free fatty acids, increase in plasma carnitine, and low levels of urine ketones.4,8,9 Presentation in children may often appear similar to that of Reye syndrome.2 In many long-chain fatty acid oxidation defects, cardiac and skeletal muscles are involved, but this has not been observed in patients with CPT-1A deficiency.2 There has been only 1 documented case of adult presentation of CPT-1A deficiency in an Inuit male adult in Canada. He was found to have the P479L and homozygous for c.1436T. The male adult presented with episodes of muscle cramps followed by vomiting and eventual hospitalization during episodes. Laboratory results revealed elevated creatine kinase. No hypoglycemia occurred.10 There have been documented cases of CPT-1A deficiency causing acute fatty liver of pregnancy5 and hypertension, elevated liver enzymes, low platelets (HELLP syndrome) in pregnancy.11 Pregnant women who are carriers must be counseled as they are at increased risk of developing acute fatty liver of pregnancy.2,3 These pregnant women should be observed closely throughout their pregnancy for any signs and symptoms of acute fatty liver of pregnancy. Acute fatty liver of pregnancy may present as hypoglycemia, hyperammonemia, excessive vomiting, abdominal pain, high blood pressure, jaundice, and abnormal liver enzymes, which then progress to liver failure and bleeding diathesis.2,6
DIAGNOSIS
Diagnosis is made by the tandem mass spectrometry (MS/MS) on the expanded newborn screen. The MS/MS results will reveal an elevated free carnitine (CO) to C16 + C18 ratio (CO/[C16 + C18]). Birth stress and transplacental transfer of carnitine may contribute to CPT-1A deficiency being detected at higher rates with the second newborn screen done at 14 days of age.4 The state of Alaska has identified
25
many infants on a third newborn screen that was done because of abnormal thyroid or other test on one of the first 2 screens. These infants first 2 screens had been normal for the CPT-1A deficiency.11 Thus, it appears that MS/MS is not a good screening tool for the arctic variant of CPT-1A deficiency as it appears to miss many babies. Other diagnostic tests include encephalopathy with hypoglycemia and low ketone levels. Patients with the classic form may have elevated serum transaminases, ammonia, liver function tests, free fatty acids, and total carnitine. The arctic variant usually exhibits hypoglycemia and hypoketosis. Tests for urine organic acids may present with ketone levels being low, dicarboxylic aciduria with elevated C12 dicarboxylic acid, and 3-hydroxyglutaric acid may be present. The CPT-1 enzyme activity is usually 5% to 20% of normal when cultured in skin fibroblasts.4 The enzyme activity is reported as slightly higher in the Inuit population at 10% to 25%. After an individual has had the enzymatic confirmation of CPT-1A, a sequence analysis should be done to identify the mutation. The current rate of identifying the mutation is higher than 90%.2 Targeted PCR mutation analysis can be useful in the diagnosis in the Inuit populations as it specifically looks for the P479L mutation. Prenatal diagnosis should be done only on patients with prior identification of the CPT-1A in the family.2
retardation or learning disabilities.8 Patients who are diagnosed with CPT-1A deficiency should have their liver enzymes and liver function monitored at clinic visits even during asymptomatic periods.2 Management in the acutely ill patient should include immediate treatment for hypoglycemia with an intravenous (IV) dextrose solution if they are unable to eat. These patients should avoid hepatotoxic agents. Patients who have experienced prolonged or repeated episodes of hypoglycemia should have a complete neurologic evaluation to assess for residual deficits.2 Consideration must be taken for the affected individual who must undergo fasting for tests or surgical procedures. These individuals must be hospitalized and managed with IV dextrose solution to prevent metabolic crisis. These individuals must be maintained on IV dextrose fluids postoperatively until they are once again able to consume oral intake.12
PROGNOSIS
The effects of CPT-1A deficiency are often outgrown and metabolic crises are less frequent usually by the age of 5. When the dietary regimen is followed, the infant will have a normal healthy life with normal growth and development.8 Children who have experienced repeated episodes of metabolic crisis may have permanent neurologic deficits, learning disabilities, mental retardation, and delayed motor skills.6 The arctic variant has a good prognosis when a normal consistent diet is followed.
TREATMENT
After diagnosis of the arctic variant has been made in the neonate who has not yet presented with symptoms, the treatment is prevention. Families need to be counseled to give frequent feedings to their infants and small children. For the infant, it is necessary to feed every 3 to 4 hours, from birth to 3 months. After 3 months of age, the infant can start going the number of hours equal to their age in months between some feeds. Between ages 1 and 2, children should go no more than 10 hours between meals. After the age of 2, it is safe to go up to 12 hours without eating as long as no illness is present. Affected individuals should eat a snack before going to bed at night and upon getting up in the morning.12 During times of illness and stress, these time frames do not apply.11 For patients with the classic form, a diet high in carbohydrates and low in fat is beneficial. In the case of arctic variant, a high-fat diet may actually protect against hypoglycemia. Supplementation with medium chain triglyceride (MCT) oils may also be necessary. For older patients, it is necessary to consume at least one-third of total calories from MCT because MCT do not rely on the carnitine shuttle for transport into the mitochondrion and can then be utilized in -oxidation.4 The risk of not following this diet and ensuring frequent feedings is that the patient may experience repeated episodes of metabolic crisis, leading to mental
RECURRENCE RISK AND GENETIC COUNSELING

Carnitine palmitoyltransferase-1A deficiency is an autosomal recessive condition and genetic counseling is important for families. Families should be counseled to understand that for parents who are heterozygous carriers of the condition, their offspring will have a 25% chance of becoming a homozygous affected individual who will present with the condition, 50% chance of being a heterozygous carrier just like the parents and be asymptomatic of the condition, and 25% chance of being completely unaffected with the defective gene. Most parents do not realize that they are carriers of the gene until they have an affected child. Many times parents will already have had a previously healthy child and counseling is essential for these parents to understand the future risk of each child they could conceive.6 The recurrence rate may be higher in populations with a high carrier rate or high rates of consanguinity, and people in these areas should be counseled on their possible increased risk with reproduction.2 The siblings of a homozygous affected individual should receive both enzyme testing and molecular genetic testing for possible diagnosis, regardless of
26
Dykema
age and lack of presenting symptoms. This testing is essential to avoid negative outcomes that may be a result of the metabolic crisis.2 Testing of siblings of arctic variant patients is not longer being conducted as it is assumed that they are affected. Prenatal testing during pregnancy can also be conducted. An enzyme analysis of the amniotic fluid cells obtained during an amniocentesis or chorionic villus sampling can be done. In families where parents have been identified as being heterozygous carriers, molecular genetic testing can also be performed on fetal cells obtained through amniocentesis.2 Obtaining a prenatal diagnosis is not necessary, and testing can be performed immediately after the infant is born. The genetic counselor should present all options to the parents during pregnancy.
FUTURE RESEARCH
There are multiple opportunities for future research in those diagnosed with CPT-1A deficiency. Because of the recent initiation of the expanded newborn screening that is now identifying more individuals with CPT1A deficiency, studies should be conducted to identify the long-term outcome in these patients with the arctic variant.11 Studies are currently taking place in both Alaska and Canada to evaluate the possible correlation between high infant death rates and increasing awareness of the CPT-1A P479L variant.5,11 The state of Alaska has also identified that despite the increased identification of individuals with CPT-1A deficiency, since the expanded newborn screening was started in 2003, these newborn screens are not catching all of the cases. Future studies need to be conducted to see at what rate MS/MS-expanded screens are effectively identifying affected individuals compared with DNA testing for identification of at-risk people of Inuit descent.11 This research will lead to a better understanding and future care of individuals diagnosed with CPT-1A deficiency.
IMPLICATION
FOR
PROVIDERS
The role of the provider is multifaceted. Ensuring that all patients receive the newborn metabolic screen is of absolute importance. Not every state includes screening for CPT-1A deficiency in its expanded newborn screen. The provider must be aware of what tests are included in the states screen. Obtaining a complete family history and recognizing those patients who are at increased risk, for example, those of Inuit descent, and ensuring that at-risk individuals are screened for CPT-1A deficiency is the first step. A positive MS/MS result is considered a medical emergency in the nonInuit population and the provider must immediately respond to the results and contact the family. The provider must ascertain that the newborn is in a healthy state and have the parents bring the newborn in for clinical evaluation. A referral should be made to a metabolic specialist. Further tests must be ordered for confirmation and diagnosis after the positive MS/MS results. Parents must receive education on signs and symptoms as well as management.13 As CPT-1A deficiency can have a very rapid onset without warning signs, it is important that families be notified and provided with education and preventative instructions as soon as possible. An emergency medical treatment plan should also be provided to families to present to community health care providers that may be unfamiliar with the treatment of CPT-1A deficiency. Recognizing the presentation of hypoglycemia without ketones as a possible fatty acid oxidation defect and further testing to rule out things such as CPT-1A deficiency should be done.2 Parents need to receive extensive education on the management of their affected child. The parents must be aware that it may be necessary to seek medical attention for even minor illnesses. Parents must ensure that their child is taking in extra carbohydrates while sick and if their child is unable to do this, hospitalization for IV administration of dextrose solution may be necessary.6
CONCLUSION
Carnitine palmitoyltransferase-1A deficiency is an autosomal recessive disorder in which true significance and incidence are yet to be determined as further research and studies are conducted. The role of the provider is of utmost importance in prevention of negative consequences of CPT-1A deficiency. Through adequate knowledge of the disorder, recognition of the presentation, diagnosis, management, and genetic counseling, the negative consequences of CPT-1A deficiency going untreated can be prevented and these affected individuals can lead a more normal life.
References
1. Bougneres PF, Saudubray C, Marsac C, et al. Fasting hypoglycemia resulting from hepatic palmitoyltransferase deficiency. J Pediatr. 1981;98:742-746. 2. Bennett MJ, Narayan SB. Carnitine palmitoyltransferase 1A deficiency. In: Pagon RA, Bird TD, Dolan CR, et al, eds. Gene Review. Seattle, WA: University of Washington, Seattle; 1993. http://www.ncbi.nlm.nih.gov/books/NBK1527/. Accessed November 20, 2009. 3. US National Library of Medicine. Genetics Home Reference: Your Guide to Understanding Genetic Conditions. CPT1A. Fact sheet. 2009. http://ghr.nlm.nih.gov/ genecpt1a. Accessed November 20, 2009. 4. Longo N, Di San Filippo CA, Pasquali M. Disorders of carnitine transport and the carnitine cycle. Am J Med Gen. 2006;142C(2):77-85. doi:10.1002/ajmg.c.30087. 5. Greenberg CR, Dilling LA, Thompson GR, et al. The paradox of the carnitine palmitoyltransferase type Ia P479L variant in Canadian Aboriginal populations. Mol Genet Metab. 2009;96:201-207. doi:10.1016/j.ymgme.2008.12.018. 6. STAR-G Screening, Technology and Research in Genetics. Genetic fact sheets for parents: fatty acid oxidation disorders fact sheet. 2007. http://www.newbornscreening.info/Parents/fattyaciddisorders/CPT1.html. Accessed November 15, 2009. 7. Rajakumar C, Ban MR, Cao H, et al. Carnitine palmitoyltransferase IA polymorphism P479L is common in Greenland Inuit and is associated with elevated plasma apolipoprotein A-I. J Lipid Res. 2009;50:1223-1228. doi:10.1194/ jlr.P900001-JLR200. 8. Wood T, LeBlond C. Carnitine palmitoyl transferase-1A deficiency rate in Alaska. State Alaska Epidemiol Bull. September 13, 2006;19 http://www.epi.hss.state.ak. us/bulletins/docs/b2006_19.pdf. Accessed November 10, 2009. 9. Roomets E, Lundbom N, Pihko H, Heikkinen S, Tyni T. Lipids detected by brain MRS during coma caused by carnitine palmitoyltransferase 1 deficiency. Neurology. 2006;67(8):1516-1517. doi:10.1212/01.wnl.0000240118.82937.ed.

10. Brown NF, Mullar RS, Subramanian I, et al. Molecular characterization of L-CPT 1 deficiency in six patients: insights into function of the native enzyme. J Lipid Res. 2001;42:1134-1142. http://www.jlr.org. Accessed October 31, 2009. 11. Koeller D, Wood T. Carnitine palmitoyltransferase-1A deficiency [PowerPoint slides]. http://www.anthc.org/chs/epicenter/upload/1B-CPT1-Deficiency-Update. pdf. Published 2008. Accessed November 15, 2009. 12. Murkowski FH, Jackson K, Mandsager R, Birch S, LeBlond C. CPT1 deficiency State
27
of Alaska Department of Health and Social Services [Brochure]. http://www.hss. state.ak.us/dph/wcfh/metabolic/downloads/cpt1_brochure.pdf. Accessed 2006. Accessed November 1, 2009. 13. American College of Medical Genetics. Newborn screening ACT sheet [elevated CO/C16 C18] Carnitine palmitoyl transferase 1 deficiency (CPT1) Fact sheet. http://www.acmg.net/StaticContent/ACT/C0_C16C18.pdf. Published 2006. Accessed November 10, 2009.
ERRATUM Mean Oxygen Saturation in Well Neonates at Altitudes Between 4498 and 8150 Feet: Erratum
In the article appearing on pages 412-417 in the December issue, the well neonates birth weights were reported incorrectly in the Results section of the abstract and in Table 2. The birth weights ranged from 18354740 grams, with 94.3% classified as term and 5.7% classified as pre-term. The corrected table follows below with the corrections bolded.
Reference
Ravert P, Detwiler TL, Dickinson, JK. Mean oxygen saturation in well neonates at altitudes between 4498 and 8150 feet. Adv Neonatal Care. 2011;11(6):412-417.
TABLE 2. Study Participant Demographics (n 812)

Provo, Utah 4498 ft Gender Male Female Ethnicitya American Indian/ Alaskan Native Asian Black/African American Hispanic/Latino Native Hawaiian/ Pacific Islander White/Caucasian Mode of Delivery Vaginal C-Section Term/pretermb Term (37 wk) Late preterm (37 wk) Birth weight, g
a20 b2
Steamboat Springs, Colorado 6800 ft
Mammoth Lakes, California 7851 ft
Aspen, Colorado 7890 ft
Vail, Colorado 8150 ft
Total, n (%)
159 171 0 4 2 77 2 247 275 55 313 20 1945-4740
162 158 3 1 1 32 1 263 226 92 301 19 1835-4450
9 10 0 0 0 8 0 11 14 5 18 0 2601-3640
26 17 0 1 0 15 0 26 34 9 41 1 2555-4270
44 56 0 0 0 38 0 60 69 33 91 6 2072-4146
400 (48.8%) 412 (50.2%) 3 (1%) 6 (1%) 3 (1%) 170 (21.5) 3 (1) 607 (76.6) 618 (76) 194 (24) 764 (94.3) 46 (5.7) 1835-4740
missing data. missing data.
DOI: 10.1097/ANC.0b013e3182451cde


10. Brown NF, Mullar RS, Subramanian I, et al. Molecular characterization of L-CPT 1 deficiency in six patients: insights into function of the native enzyme. J Lipid Res. 2001;42:1134-1142. http://www.jlr.org. Accessed October 31, 2009. 11. Koeller D, Wood T. Carnitine palmitoyltransferase-1A deficiency [PowerPoint slides]. http://www.anthc.org/chs/epicenter/upload/1B-CPT1-Deficiency-Update. pdf. Published 2008. Accessed November 15, 2009. 12. Murkowski FH, Jackson K, Mandsager R, Birch S, LeBlond C. CPT1 deficiency State
27
of Alaska Department of Health and Social Services [Brochure]. http://www.hss. state.ak.us/dph/wcfh/metabolic/downloads/cpt1_brochure.pdf. Accessed 2006. Accessed November 1, 2009. 13. American College of Medical Genetics. Newborn screening ACT sheet [elevated CO/C16 C18] Carnitine palmitoyl transferase 1 deficiency (CPT1) Fact sheet. http://www.acmg.net/StaticContent/ACT/C0_C16C18.pdf. Published 2006. Accessed November 10, 2009.
ERRATUM Mean Oxygen Saturation in Well Neonates at Altitudes Between 4498 and 8150 Feet: Erratum
In the article appearing on pages 412-417 in the December issue, the well neonates birth weights were reported incorrectly in the Results section of the abstract and in Table 2. The birth weights ranged from 18354740 grams, with 94.3% classified as term and 5.7% classified as pre-term. The corrected table follows below with the corrections bolded.
Reference
Ravert P, Detwiler TL, Dickinson, JK. Mean oxygen saturation in well neonates at altitudes between 4498 and 8150 feet. Adv Neonatal Care. 2011;11(6):412-417.
TABLE 2. Study Participant Demographics (n 812)

Provo, Utah 4498 ft Gender Male Female Ethnicitya American Indian/ Alaskan Native Asian Black/African American Hispanic/Latino Native Hawaiian/ Pacific Islander White/Caucasian Mode of Delivery Vaginal C-Section Term/pretermb Term (37 wk) Late preterm (37 wk) Birth weight, g
a20 b2
Steamboat Springs, Colorado 6800 ft
Mammoth Lakes, California 7851 ft
Aspen, Colorado 7890 ft
Vail, Colorado 8150 ft
Total, n (%)
159 171 0 4 2 77 2 247 275 55 313 20 1945-4740
162 158 3 1 1 32 1 263 226 92 301 19 1835-4450
9 10 0 0 0 8 0 11 14 5 18 0 2601-3640
26 17 0 1 0 15 0 26 34 9 41 1 2555-4270
44 56 0 0 0 38 0 60 69 33 91 6 2072-4146
400 (48.8%) 412 (50.2%) 3 (1%) 6 (1%) 3 (1%) 170 (21.5) 3 (1) 607 (76.6) 618 (76) 194 (24) 764 (94.3) 46 (5.7) 1835-4740
missing data. missing data.
DOI: 10.1097/ANC.0b013e3182451cde

ANITA CATLIN, DNSc, FNP, FAAN Section Editor
A Model Program for Perinatal Palliative Services

Suzanne Engelder, MSW; Kathryn Davies, MSN, RNC; Terry Zeilinger, MSN, RNC; Dana Rutledge, PhD, RN
ABSTRACT Despite the fact that parents of infants with lethal anomalies may not want full-blown medical care for their infants after birth, most such infants die in neonatal intensive care units. Although neonatal nurses are trained to administer life-saving treatments, they may suffer from moral distress when faced with caring for babies with incompatiblewith-life conditions. This article describes a Perinatal Comfort Care program in which (a) care is provided at the time of diagnoses/antenatally and includes home visits by members of an interdisciplinary hospice team; (b) care is collaborative, community-based, and family-centered, and takes place in labor and delivery and on the mother baby unit; and (c) follow-up to the family continues for 1 year after the death. Neonatal nurses can become involved either by initiating efforts to form a perinatal comfort care program or by joining an existing team. KEY WORDS: family nursing, grief, hospice care, infant, intensive care, neonatal, neonatal nursing, newborn, nurses role, palliative care, patient advocacy, professional-family relations, psychological, stress
sample case: Baby Gwith anencephaly and a ventricular septal defectwas born by spontaneous vaginal delivery. Her parents had been told by their obstetrician that this baby would most likely die on her first day of life, but were hoping for a miracle. Baby G came out of her mothers womb crying. Mr and Mrs G appeared hopeful as they heard her loud cry. But as Baby G was quickly moved to the warmer, they saw that the prenatal tests were correct. Baby G was transported to the neonatal intensive care unit (NICU) before her mother and father could hold her. The NICU was only 20 minutes from the delivering hospital, but to
Author Affiliations: St Joseph Hospice, St Joseph Perinatal Comfort Care (Ms Engelder), Nursing (Mss Davies and Zeilinger), Mother Baby Unit (Ms Zeilinger), and Clinical Education (Dr Rutledge), St Joseph Hospital, Orange, California. The authors declare no conflict of interest. Correspondence: Dana Rutledge, PhD, RN, Clinical Education, St Joseph Hospital, 1100 W Stewart Dr, Orange, CA 92863 (dana.rutledge@stjoe.org). Copyright 2012 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0b013e318244031c
28
her parents, this seemed like the distance of an ocean. Mrs G stayed in the hospital for about 36 hours; Mr G shared photographs and stories of their daughter bottlefeeding well, and crying when she was hungry or being bothered. They spent as much time in the NICU as possible, changing her diapers and feeding her. Baby G survived 1 day, then 2 days, and by the fifth day, the nurses and neonatologist began discussing sending her home. Her parents were in shock. They had been told that the baby would not live more than a day. How could they take this baby home to live and then die in their home? They had 2 other children to consider. On a daily basis, this and similar scenarios are played out in NICUs across the United States. Most parents are not prepared for the delivery and death of their babies with lethal diagnoses. Babies are admitted to the NICU, which may be unprepared for a palliative care program. This article documents a program designed for parents and families of such children. This program prepares parents for what they can expect at the time of the birth and the expected death. Parents are educated regarding how their baby will look and act. They are instructed on how to care for their infant in the postpartum setting with nurses giving them opportunities to parent their
29
babies. Nurses help them make memories and celebrate the lives of each babywhether that life is for a few moments or a few weeks.
BACKGROUND
Many infants die prenatally or in the neonatal period because of prematurity or fetal abnormalities that are incompatible with life.1,2 More children die in the first year of life than any other period.3 Of those deaths, two-thirds occur within the first 27 days of life.2 Congenital anomalies account for the largest number of neonatal deaths.3 These anomalies include Trisomy 13, 15, and 18, anencephaly, Potter syndrome, and multiple severe heart and lung conditions. While life expectancy for these infants is moments to hours after birth, some survive for up to a week and even longer. For infants with lethal anomalies, improvements in diagnostic testing have led to prenatal identification of many conditions.3 Parents may be given the choice to terminate the pregnancy or to carry the pregnancy to term; 20% to 40% of parents choose to continue with their pregnancy.4 Currently, most newborn deaths from congenital anomalies occur in NICUs.5 However, in one study, two-thirds of counseled parents of infants who may be premature (22-23 weeks gestation) chose comfort care for their infants, and not care in NICUs.1
Perinatal palliative care is a holistic approach to care where a fetus or infant has a life-threatening illness or condition. The World Health Organization10 envisions palliative care as diminishing suffering within the family structure in that it includes early identification followed by ongoing assessment and treatment of the patient as well as family members. Perinatal palliative care can be given in any setting from a tertiary care hospital to the family home. In this article, we label care to families of babies with a lethal condition as perinatal comfort care, which encompasses the tenets of both hospice and palliative care.
MORAL DISTRESS
IN
NICUS
PERINATAL HOSPICE MOVEMENT

Perinatal hospice care is family-centered care that begins at the time of diagnosis rather than at the time of birth or death.2,3,6 Parental grieving begins early; therefore, care and support are offered from the time of the diagnosis through the delivery, expected death, and bereavement. Perinatal hospice gives parents the opportunity to participate in advance care planning and be prepared for the birth and the possibility of death of their baby. When parents are involved in creating goals of care and participating in advance care planning, lower levels of futile treatments may occur1,2,7; in other words, families who had palliative care or hospice consultations may have babies with significantly fewer central lines, feeding tubes, endotracheal tubes, radiographs, use of paralytic medications, mechanical ventilation, and days in the NICU. Perinatal hospice offers supportive care of families with fetuses known to have a lethal condition. Some perinatal hospice programs provide care in the NICU setting after the birth and transfer of the medically fragile infant. Programs that maintain care within normal mother-baby care units are a less common option; these programs bring end-of-life care to families who do not want the intensive care experience.8 As of the time of writing, there were 82 US and 9 international perinatal palliative or hospice care programs listed on the Perinatal Hospice Web site.9
How individual NICUs operationalize family-centered care philosophies differs from one unit to another.11 While NICU nurses are trained to administer life-saving treatments, they may suffer from moral distress when faced with caring for babies with incompatible-with-life conditions.12 Moral distress results from awareness of acting in a manner that the nurse perceives to be wrong. In a recent survey of NICU nurses working in a northeastern hospital system,12 nurses reported having the most intense moral distress when faced with the following situations: (a) continuing life support when it is not in the best interest of the baby, (b) initiating extensive life-saving actions when believing that these only prolong dying, and (c) participating in care of ventilator-dependent children where the decision to stop is uncertain. Cavalier et al12 conclude that experiencing moral distress can negatively impact nurses in terms of their own quality of life but also in the quality of patient care delivered. Prevention of moral distress in nurses is an important issue for NICU nurses today. In this article, we first describe our hospice-/hospital-based Perinatal Comfort Care (PCC) program, which seeks to prevent the unnecessary and often traumatic transfer of newborns to the NICU. After this, we discuss the potential role of NICU nurses in promoting comfort care for these infants, knowing that doing this may mean recommending that these infants receive care away from the NICU setting.
PROGRAM DEVELOPMENT AND DESCRIPTION

The PCC is a collaborative program between the outpatient hospice team and the inpatient hospital team. We seek to provide seamless care from the time of diagnosis through the pregnancy, delivery, and into the period of bereavement. Unique to our PCC program are the following: (a) care is provided at the time of diagnoses/antenatally and includes home visits by members of an interdisciplinary hospice team; (b) care is collaborative, community-based, familycentered, and takes place in labor and delivery (L&D)
30
Engelder et al
and on the mother baby unit (MBU); (c) follow-up to the family continues for 1 year after the death. Our hospital is a 525-bed Catholic hospital with Magnet accreditation. The hospital sees more than 5000 deliveries a year and sits adjacent to the county 200-bed childrens hospital with a 54-bed NICU.
Phase 1: Initial Support

In 2004, an L&D nurse and the case manager for Womens Services at the hospital experienced a number of challenges working with a family who was grossly unprepared for a babys birth and death due to an anomaly. Interested staff began meeting and conducted an informal needs assessment to determine the feasibility of a perinatal hospice program. They found the following: (a ) perinatal deaths at the hospital ranged from 50 to 60 per year and a consistent minority of these was due to lethal conditions; (b ) no perinatal palliative care programs existed in the geographic area; (c ) support from key stakeholders (obstetricians, perinatologists,
Key Stakeholders for a PCC Program

Table 1 identifies the multiple stakeholders from several disciplines who will potentially be involved in such a program. Possible roles for each stakeholder are described across different phases during the program and its development.
TABLE 1. Stakeholder Roles and Timing of Involvement During Perinatal Comfort Care Program Development
Phase 1: Needs Assessment X X Phase 2: Resource Allocation, Groundwork Phase 3: Program Implementation X X Phase 4: Evaluation/ Maintenance X X
Role Description Obstetrician Perinatologist Neonatologist Refers family; oversees care of mother; attends FC Consults with OB; provides education to parents and staff, as needed; attends FC Consults with OB; provides education to parents/team; assists with decision making regarding care of the baby; attends FC; liaison to the NICU Consults with OB; provides education to parents/team; reviews birth plan and develops care plan for baby; responsible for care of baby while on MBU; attends FC Communication with CM for discharge planning; reviews BP/medications with hospital pediatrician; follows baby at home as needed, and collaborates with hospice team for pain and symptom management; signs death certificate Attends FC; prepares staff on the unit for the potential inpatient stay of mothers predelivery
Pediatrician (hospital)
Community pediatrician
Medical/ surgical/ gynecology unit manager
(continues)
31
TABLE 1. Stakeholder Roles and Timing of Involvement During Perinatal Comfort Care Program Development (Continued )
Phase 1: Needs Assessment X Phase 2: Resource Allocation, Groundwork X Phase 3: Program Implementation X Phase 4: Evaluation/ Maintenance X
Role Description L&D manager Oversees care in L&D; interfaces with OB, Policy & Procedure Committee; budgets for staff time; advocates for family in L&D; supports the use of birth plan; attends FC Care of mother/baby while in L&D; advocates, reviews, and honors birth plan; interfaces with OB/neonatologist/family; provides support/education to patient/family; gathers mementos per birth plan; contacts Now I Lay Me Down to Sleep, a group of professional photographers who take and donate photographs to these families; attends FC
L&D nurse
Mother baby Oversees care on MBU; interfaces with OB/neonatologist/pediatriunit cians, Policy & Procedure manager Committee; budgets for staff time; advocates for family on MBU; advocates for palliative care for baby; serves as content expert for staff related to newborn diagnoses, disease/dying process, care of baby, and honoring birth plan; attends FC Mother baby Care of mother/baby while on MBU; advocates, reviews/honors unit birth plan; interfaces with OB/ nurses neonatologist/pediatricians/family; provides support/education to patient/family; gathers mementos per birth plan; instructs parents in care of newborn; delivers care with knowledge of diagnosis, disease/dying process Social worker (hospital) Makes contact with family prior to FC; attends FC; takes family on tour of L&D, MBU, and NICU after conference; advocates, provides emotional support, counseling; assists with community resources, mortuary planning; honors birth plan, interfaces with program social worker
(continues)

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Phase 1: Needs Assessment X Phase 2: Resource Allocation, Groundwork Phase 3: Program Implementation X Phase 4: Evaluation/ Maintenance
Role Description Chaplain (hospital) Attends FC; provides spiritual support/debriefing at FC; provides spiritual assessment/ support during hospital stay; brings access to/arranges religious traditions/ceremonies (eg, baptism, blessing); works with local church/parish/ synagogue to meet the familys needs; provides follow-up regarding baptismal certificates, memorial service; offers spiritual/religious/cultural expertise Attends FC; interfaces with all physicians to coordinate discharge plan; interfaces with insurance companies, hospice/home health, pharmacy, placement agencies; advocates for family Attends FC; supports expertise of perinatal hospice staff, perinatologist; provides support/ education to family/team Coordinates outpatient program does initial contact with family; makes home visit; coordinates admission ongoing assessments; makes referrals to program chaplain/music therapist; makes referrals to community resources coordinates/sets up FC; works with family/staff to develop birth plan; sets up photograph of baby, footprints provides education/support to family; drafts necessary written materials; arranges for birthing classes; advocates for family; interfaces with hospital inpatient team/OB/ perinatologist, mortuary/ funeral planning; initiates financial assessment regarding mortuary
Case manager
Medical director
Perinatal hospice coordinator (social worker)
(continues) www.advancesinneonatalcare.org
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Phase 1: Needs Assessment Phase 2: Resource Allocation, Groundwork Phase 3: Program Implementation Phase 4: Evaluation/ Maintenance
Role Description provides emotional support/grief counseling to parents, siblings, grandparents, schools, education/preparation for birth/death; arranges visit with parents to OB; bereavement assessment, bereavement care communicates with OB during pregnancy and bereavement coordinates peer support education to hospital/ community Perinatal hospice nurse Meets with family in the home; provides education, support, and preparation for L&D; coordinates babys birth/death; assists with birth plan completion; interfaces with OB/perinatologist; attends FC Meets with family in the home; provides spiritual assessment/ support; connects with religious/spiritual traditions; performs ceremonies as requested; provides prayer, relaxation, meditation, and bereavement follow-up; assists with memorial/funeral services as requested Meets with the family in the home; provides emotional support/ counseling through the use of music interventions; provides care specific to siblings, bereavement support, and memorials as requested Initial referral
Perinatal hospice chaplain
Perinatal hospice music therapist
Genetics center staff
Note. BP birthing plan; CM case manager; FC family conference; L&D labor and delivery; MBU mother baby unit; NICU neonatal intensive care unit; OB obstetrician.
neonatologists, hospital staff members, and administration) was strong. A core group of staff volunteers and a physician champion began working on a strategic plan that was compatible with the hospital mission and vision. Available resources and potential barriers to the program were identified. Foundation funds were used as
seed monies, which were followed over time with foundation grants, donations, and support from the hospitals Employee Partners Program. Initial questions at startup included uncertainty regarding the number of patients, how much staff time would be involved, and whether resources would be adequate to sustain the program.
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Phase 2: Groundwork
Team members explored models of other successful programs, foundations for potential funds, and insurance coverage for counseling under mothers benefits. Because of the licensing regulations of hospice, it was determined that we could not provide medical care to the pregnant mother in the outpatient setting. The team decided that the program would focus on support, education, and collaboration with other community resources to meet families needs. During this phase, we explored details of what a hospice care service to families expecting babies with a lethal condition would look like. The following questions were considered: Who would be receiving these services and who would be providing them? What are the services to be provided? When and where will they be provided? We discussed what type of education would be needed for hospital and program staff, using multiple opportunities to gain staff involvement and acceptance. For example, we determined that MBU nurses would need a significant amount of training, to be provided by the core interdisciplinary PCC team, and that the training should be offered 4 times a year at the onset and tapered down to annually. To encourage buy-in, we promoted awareness of the new program to local physicians, using Grand Rounds sessions. In addition, we presented informational sessions to obstetrics and pediatric medical committees and the neonatologists at the childrens hospital. We asked for and received input from physician stakeholders on the development of a standard Birthing Plan and Preprinted Comfort Care Order Sets. In addition, we developed relationships with community partners to collaborate on the care of these families. We did tentative and cautious promotion of the program to potential referral sources that included community obstetricians, a local genetics center, maternal and fetal care agencies, and our hospital-based insurance providers. Promotion consisted of formal presentations and mailing of written materials that included brochures, fact sheets, and referral forms.
Program Description
Once a referral is made, the program coordinator meets with parents either in the home or at the hospital. At this initial meeting, we explore goals of care with the parents. If the parents are in agreement with comfort care and do not want their baby transferred to an NICU for aggressive care, consents are signed, and the family is admitted to the program. The outpatient PCC team, which consists of a staff nurse, social worker, chaplain, and music therapist, begins providing care immediately. Home visits are made to provide support, counseling, and education. A Birthing Plan (BP) is completed, which indicates the parents
wishes regarding the care of their baby at the time of birth and the time of death. The BP is a tool used by the PCC team to initiate discussions about (a) direction of care (resuscitation, feeding, organ donation, autopsy), (b) parental wishes (to hold or bathe the baby, have the baby baptized, take photos, etc), and (c) care of the mother (milk suppression, options for extended stay, transfer). A family conference is arranged at 28 to 30 weeks gestation (earlier is better) to be held at the hospital. The following team members attend: parent(s) and members of their support system, obstetrician, perinatologist/PCC medical director, neonatologist, anesthesiologist, specialist if appropriate (ie, pediatric cardiologist), geneticist if appropriate, L&D manager, MBU manager, medical/surgical/gynecology unit (Med/Surg/GYN) manager, hospital chaplain, hospital social worker, hospital case manager, and PCC coordinator. The BP is reviewed and team members are introduced. Parents are given the opportunity to express their goals of care, ask questions, and clarify care options. This conference is crucial. It helps the parents gain some sense of influence over circumstances that they cannot totally control. The need for flexibility related to the BP is stressed. Parents are told that they have the right to change their minds at any time regarding the care of their baby. These meetings range in length from 1 to 11/2 hours. Immediately following the conference, the hospital chaplain meets with the parents and support system to debrief and provide support. Following the conference, an L&D nurse and hospital social worker take the family on a tour of L&D, MBU, Med/Surg/GYN unit, and across the street to the childrens hospital NICU. The NICU is a vital part of the tour. When parents are able to see what a real NICU looks like, it makes things real for them, and more often than not, it validates their decision not to pursue aggressive care in the NICU. Upon delivery of the baby, which may be spontaneous or planned, the parents are admitted to the L&D unit. When possible, the BP is honored (96% of the time since the PCC began). On the MBU, private rooms are arranged, visiting hours are extended, and parents are given as many opportunities as possible to make memories, parent their baby, and say goodbye. A special grief cart for these families has been created with literature, a CD player (to play the CD that was shared with the family from the music therapist), handmade blankets, and a selection of spiritual care resources. If the baby survives longer than 24 hours, the discharge process/planning is begun. The case manager begins to arrange equipment and medications that will be needed by the family to care for the baby at home. Home health is involved, and many times, a home health nurse will meet with the family prior to discharge from the hospital. The goal is a smooth
35
TABLE 2. Scheduled Follow-up Bereavement Care

1 wk Death of baby Initial follow-up card 2 wk Home visit or phone call and first mailing 3 mo 6 mo 9 mo Phone call 12 mo Phone call and 1 Year Anniversary Card
Phone call and Third mailing second mailing
Multiple contacts likely

Note. Special mailings are sent for holidays, Mothers Day, and Fathers Day.
transition from acute care to home hospice/palliative care. When parents are prepared for the possible discharge of their baby, this is not as much of a shock as it was to the family in our opening case scenario. Bereavement care for the family continues for 1 year. Follow-up consists of a minimum of 6 contacts, by phone, home visit, or mail (Table 2). Between the babys birth and 1 month, contacts are usually more frequent, and throughout the year, more contacts may occur than on the schedule. On average, there have been 12 contacts with families during this 1-year period, ranging from 3 to 22 contacts. Available to all families who participate in the PCC are both English and Spanish parent bereavement support groups, access to community resources such as individual counseling, low-cost medical clinics, and a hospital memorial service, which is offered 4 times a year.
Phase 3: Program Implementation and Evaluation

As we implemented the program (2005), staff and physician (pediatricians, obstetricians, and neonatologists) acceptance was excellent. Hospital staff members from all disciplines were involved in maternal/fetal care. A cadre of L&D and MBU nurses has been involved since the programs inception. These nurses initially received 6 to 8 hours of training and have consistently been involved in the care of these patients. Nursing leaders always ask staff members before assigning them to a PCC family as there are individuals who are not comfortable with such an assignment. Nurses on the Med/Surg/GYN unit where mothers may stay if hospitalized during the antepartum have been less involved. However, in 2009, the Med/Surg/ GYN nurse manager requested some targeted education for these nurses after they cared for several PCC patients. The clinical educator and advanced practice nurse for Womens Health provided unit-based education to staff members who focused on antenatal care for these mothers. An interesting outgrowth from the program occurred when obstetricians who had been involved in the PCC conferences began asking for
high-risk conferences predelivery for mothers with other types of high-risk pregnancies. Referrals to the program have grown over time, now averaging 12 to 15 per year (see Figure 1). Families express satisfaction with the program (Table 3). The community reaction has been positive with several organizations wanting to collaborate in order to provide the best care for these families. Our PCC program is the only perinatal hospice program in a large county in Southern California. Funding for the program has been challenging. A majority (57%) of the families served meet criteria for MediCal/Medicaid, and historically, these types of prenatal services have not been covered. Initial seed money was provided through the hospital budget. Grant funding was obtained from our affiliated Health System to expand the program to our network hospitals. Ongoing support has been provided by Employee Partners, patient/family donations, and other foundations in the community whose mission is to provide care to parents who have experienced a pregnancy loss.
HOW NICU NURSES MIGHT PROMOTE PCC

As outlined earlier, developing and implementing a PCC program is a complex process. It involves multiple stakeholders, requires a physician champion
FIGURE 1.
Numbers of yearly referrals since palliative comfort care program inception.
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TABLE 3. Perinatal Comfort Care Evaluation: Family Satisfaction, Outcomes Related to Family Intactness, Subsequent Pregnancies
Yes Family felt prepared/informeda Family perceived adequate support
a
No 1 0 1
Unknown 1 1 3
Missing Data 0 1 4
34 34 28
Family felt less abandoned and isolated after receiving Perinatal Comfort Care services and after birtha Family would recommend this program to other parentsa Family experienced healthy grieving at 9 monthsb Subsequent pregnancy/delivery of healthy baby Family intact at 1 year
a
29 21 8 23
0 2 5 0
6 8 16 7
1 5 7 6
A total of 36 families responded to survey, but not all responded to every item. As evaluated by home visits made by hospice staff.
and administrative and financial support, and, for optimization, necessitates periodic staff contact with parents for potentially protracted periods of time. NICU nurses can become involved either by initiating efforts to form a PCC program or by joining an existing team. When involved in the NICU visits of PCC parents, they are integral in assisting parents to make difficult decisions about the trajectory of care of their infant. They can benefit from knowledge gained from this programs development and maintenance as well as experiences of others.3,7,13 Each organizations program will be unique, but the structure and processes of development may be similar. For all, the desired outcome is to promote family integrity and healthy parental bereavement. This is accomplished by having available resources and support systems in place that assist family members to make informed decisions, celebrate/honor their infant, and grieve that infants death.
do not wish to terminate pregnancies or who do not wish to use intensive care services for babies, if born alive. NICU nurses support of and involvement in such programs may offset the moral distress they may have suffered when these infants have been cared for in an intensive care setting that failed to promote comfort and supportive care.
References
1. Kaempf JW, Tomlinson MW, Campbell B, Ferguson L, Stewart VT. Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes. Pediatrics. 2009;123:1509-1515. 2. Moro T, Kavanaugh K, Okuno-Jones S, Vankleef JA. Neonatal end-of-life care. A review of the literature. J Perinat Neonatal Nurs. 2006;20:262-273. 3. Sumner LH, Kavanaugh K, Moro T. Extending palliative care into pregnancy and the immediate newborn period. State of the practice of perinatal palliative care. J Perinat Neonatal Nurs. 2006;20:113-116. 4. Breeze ACG, Lees CC, Kumar A, Missfelder-Lobos HH, Murdoch EM. Palliative care for prenatally diagnosed lethal fetal abnormality. Arch Dis Child Fetal Neonatal Ed. 2007;92:F56-F58. 5. Gale G, Brooks A. Implementing a palliative care program in a newborn intensive care unit. Adv Neonatal Care. 2006;6:37-53. 6. Calhoun BC, Napolitano P, Terry M, Bussey C, Hoeldtke NJ. Perinatal hospice. Comprehensive care for the family of the fetus with a lethal condition. J Reprod Med. 2003;48:343-348. 7. Pierucci RL, Kirby RS, Leuthner SR. End-of-life care for neonates and infants: the experience and effects of a palliative care consultation service. Pediatrics. 2001;108:653-660. 8. Gale G, Brooks A. Family teaching toolbox: a parents guide to palliative care. Adv Neonatal Care. 2006;6:54-55. 9. Perinatal Hospice and Palliative Care. A gift of time. http://www.perinatalhospice. org/Home_Page.html. Accessed January 5, 2011. 10. World Health Organization. http://www.who.int/cancer/palliative/definition/en/. Accessed January 5, 2011. 11. Moore KAC, Coker K, DuBuisson AB, Swett MB, Edwards WH. Implementing potentially better practices for improving family-centered care in neonatal intensive care units: successes and challenges. Pediatrics. 2003;111:e450-e460. 12. Cavalier TA, Daly B, Downing D, Montgomery K. Moral distress in neonatal intensive care unit RNs. Adv Neonatal Care. 2010;10:145-156. 13. Kauffman SG, Hauck CB, Mandel DA. Perinatal palliative care. The nursing perspective. Nurs Womens Health. 2010;14:189-197.
DISCUSSION
Experience with palliative care for families who have babies with lethal abnormalities has been limited.4 Our article offers information about a perinatal hospice care program that is unique in that care is given to families from the time of a lethal diagnosis and that care is given in both outpatient and inpatient settings. Furthermore, this care is provided in L&D and the MBU rather than in a traditional NICU setting. Outcomes from our program support development of similar programs to meet the needs of the families who
JACQUELINE MCGRATH, PHD, RN, FNAP, FAAN Section Editor
The Art of Effective Handoffs

What Is the Evidence?
Sheila M. Gephart, BSN, RN
HANDOFF COMMUNICATION PREVENTABLE ERRORS
AND
Over a decade ago, the Institute of Medicine released its landmark report To Err Is Human, reporting that nearly 100 000 lives a year are lost in the United States because of preventable medical errors.1 Errors in the neonatal intensive care unit (NICU) are often serious, yet many are preventable. Vulnerable infants are at a particularly high risk for preventable errors because of their size and immaturity. If they experience adverse drug events or nosocomial infections, their risk for negative long-term complications increases dramatically.2-4 In the NICU, more than half of adverse drug events occur in infants born at 24 to 27 weeks gestation, in contrast to a mere 3% in term infants.5 Furthermore, the lowest-gestation infants remain at high risk simply because they stay longer in the hospital and the opportunity for errors related to communication breakdowns is greater with increasing length of stay.6 If the quality of health care is to improve, communication between providers must improve whether they are nurses, physicians, respiratory therapists, or professionals interacting across disciplines.7 When care is handed off at shift change, when patients are transferred, or when those responsible for caring for a patient change because of a change in acuity or scheduling, opportunities for communication breakdowns occur. Several researchers have found that when information degrades because of ineffective handoffs, it strongly increases the opportunity for
Author Affiliation: College of Nursing, University of Arizona, Tucson. The author declares no conflict of interest. Correspondence: Sheila M. Gephart, BSN, RN, College of Nursing, University of Arizona, PO Box 210203, Tucson, AZ 85721 (sgephart@nursing.arizona.edu). Copyright 2012 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0b013e318242df86
medical errors and up to two-thirds of sentinel events are related to communication breakdowns.7-10 The Agency for Healthcare Research and Quality (AHRQ) reports that nearly half of hospital staff (N 176 811) indicate that patient information is lost during shift handoffs.11 They recommend that handoffs be structured, include an opportunity for questions and answers, and be supplemented by readily available medical records preferably in an electronic form.11 Handoffs are a standard procedure in the NICU and affect patient care more than we realize. Upon the patients admission to the NICU, prenatal and labor information is handed off from labor and delivery and the team taking care of the mother to the NICU staff. Along with verbal reports, which may be less than optimal, records are transferred with the infant. If infants are transferred from one facility to another because of their size or gestation, the handoff becomes even more complex. Gray and colleagues6 estimate that an infant who stays in the NICU for 6 months experiences more than 300 nursing shift handoffs across his or her stay, and the longer infants stay, the larger the team of nurses caring for them becomes. Many stakeholders, including the Institute of Medicine,12 AHRQ,11 American Congress Obstetrics and Gynecology,13 and The Joint Commission,14 identify the desperate need to improve handoff communication to prevent medical errors. To identify best practices in order to improve shift handoffs in the NICU, a search of MEDLINE, CINAHL, Cochrane, and the AHRQ Web site was completed in October 2011. The search was restricted to English language articles published in the last 5 years by using the key words handoffs and nursing and then narrowing the search to the NICU.
SUMMARY
OF
EVIDENCE
Little evidence was found to support any specific protocol for handoffs and the quality of the research on
37
38
Gephart
handoffs is lacking.15,16 Perhaps this is because improving handoff communication is largely local and limited to quality improvement projects that are not published. Literature on NICU-specific handoffs includes few published research articles. Gray and colleagues6 evaluated the handoff network (defined in their study as nurses communicating at change of shift), the characteristics of the team caring for highrisk neonates, and the impact of the size of the handoff network on parent satisfaction. Palma et al17 found that by using a handoff tool (defined as a sign-out tool used when neonatal providers signed out to another physician, resident, or neonatal nurse practitioner) generated by the electronic medical record in the NICU, providers were more satisfied, spent less time preparing for the sign-out, and felt that the accuracy of information shared improved. Clearly, more work is needed to determine the best approach to handoffs in the NICU. However, broad strategies to improve handoffs may be adapted from the larger body of healthcare literature that critiques handoffs across many different patient care settings (Table 1).
The following barriers to effective nursing handoffs were identified in a systematic review of 20 years of handoff literature: unstandardized approach to handoff communication, problems with equipment, environmental hindrances, complex patients, and high caseloads.16 Nursing barriers included high turnover of nurses, high patient-to-nurse ratios, too little time, splintered team dynamics, and a lack of team cohesiveness.16 Effective handoffs minimize loss of information, especially when supported by structured checklists,18 focus on pertinent information alone, use a standard structure so that information is related in a consistent way, allows time for questions, and integrates face-to-face interaction.19 Another systematic review identified the need to integrate verbal, written, and technology-supported components for hospitalist handoffs to be most effective.20 Many mnemonics have been developed to structure handoff communication and the SBAR (short for Situation, Background, Assessment, and Recommendation for action) method is cited most often in the literature.15 Tools to support handoff communication primarily include mnemonics
TABLE 1. Strategies to Improve Handoffsa

Strengthen communication skills Involve parents Be thorough and concise Keep report patient-centered Delay transfer of responsibility if there are concerns about patient stability Keep comments objective Use interactive questioning during face-to-face communication Limit interruptions Standardize the process Report information in the same order every time Develop guidelines, tools, and visual reminders (posters, pocket cards, structured forms, etc) Use a read-back process to verify information shared Audit the process to recognize and fix system problems Use technology Integrate information from electronic medical record or Kardex Give report with patient records accessible to enable quick access to patient information Train for success Practice handoffs, perhaps using simulation and include time for debriefing Address issues of hierarchy, ensuring that questions are always encouraged (experienced nurse vs the novice) Involve staff in the process Choose a mnemonic that works for your setting (eg, Situation, Background, Assessment, and Recommendation for action) Develop a training program with staff Lead the process well Adhere to expectations for structured handoffs Allow time to implement and evaluate the process Use early adopters as champions to show that the process works
From Riesenberg et al,16 Welsh et al,19 and Delmarva Foundation and the Maryland Patient Safety Center for the Handoffs and Transitions Learning Network.21
a
The Art of Effective Handoffs
39
and structured checklists, but none were found that specifically addressed the NICU population. Although it is clear from the literature that handoffs are important to ensure continuity of patient care, how handoffs affect outcomes is unclear. In the NICU, ineffective handoffs ultimately affect infants and their families if a preventable error occurs but also negatively affect staff morale, a units reputation, and team cohesiveness.
infants. By taking action and changing handoff processes, nurses can be empowered to provide the best care and avoid time-wasting errors that ineffective handoffs incur in the NICU. More high-quality research is needed to test handoff mnemonics in the NICU, identify best practices for the NICU, and publish successful implementation of standardized handoff processes so that others can test them in their units.
RECOMMENDATIONS HANDOFFS
TO IMPROVE
References
1. Kohn L, Corrigan J, Donaldson M, eds. To Err Is Human: Building a Safer Health System. Washington, DC: National Academies Press; 2000. 2. Gray JE, Goldmann DA. Medication errors in the neonatal intensive care unit: special patients, unique issues. Arch Dis Child Fetal Neonatal Ed. 2004;89(6): F472F473 3. Suresh G, Horbar JD, Plsek P, et al. Voluntary anonymous reporting of medical errors for neonatal intensive care. Pediatrics. 2004;113(6):16091618. 4. Sharek PJ, Horbar JD, Mason W, et al. Adverse events in the neonatal intensive care unit: development, testing, and findings of an NICU-focused trigger tool to identify harm in North American NICUs. Pediatrics. 2006;118(4):13321340. 5. Kugelman A, Inbar-Sanado E, Shinwell E. Iatrogenesis in neonatal intensive care units: observational and interventional, prospective, multicenter study. Pediatrics. 2008;122:550555. 6. Gray JE, Davis DA, Pursley DM, Smallcomb JE, Geva A, Chawla NV. Network analysis of team structure in the neonatal intensive care unit. Pediatrics. 2010;125(6):e1460-e1467. 7. Alvarez G, Coiera E. Interdisciplinary communication: an uncharted source of medical error? J Crit Care. 2006;26:236-242. 8. Wilson RM, Runciman WB, Gibberd RW, Harrison BT, Newby L, Hamilton JD. The quality in Australian health care study. Med J Aust. 1995;163:458-471. 9. Leape L, Brennan T, Laird N, Lawthers A, Localio A, Barnes B. The nature of adverse events in hospitalized patients: results of the Harvard Medical Practice Study II. N Eng J Med. 1991;324:377-384. 10. Sutcliffe KM, Lewton EP, Rosenthal MM. Communication failures: an insidious contributor to medical mishaps. Acad Med. 2004;79(2):186-194. 11. Agency for Healthcare Research and Quality. Hospital Survey on Patient Safety Culture: 2009 Comparative Database Report. Rockville, MD: Agency for Healthcare Research and Quality; 2009. Publication No. 09-0030. http://www.ahrq.gov/qual/ hospsurvey09/. Accessed October 18, 2011. 12. Institute of Medicine Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001. 13. ACOG Committee on Patient Safety and Quality Improvement. Communication strategies for patient handoffs. Obstetr Gynecol. 2007;109(6):1503-1505. 14. JCAHO. JCAHOs 2006 national patient safety goals: handoffs are biggest challenge. Hospit Peer Rev. 2005;30(7):89-93. 15. Riesenberg LA, Leitzsch J, Little BW. Systematic review of handoff mnemonics literature. Am J Med Qual. 2009;24(3):196-204. 16. Riesenberg LA, Leitzsch J, Cunningham JM. Nursing handoffs: a systematic review of the literature. Am J Nur. 2010;110(4):24-34. 17. Palma JP, Sharek PJ, Longhurst CA. Impact of electronic medical record integration of a handoff tool on sign-out in a newborn intensive care unit. J Perinatol. 2011;31:311-317. 18. Stahl K, Palileo A, Schulman CI, et al. Enhancing patient safety in the trauma/surgical intensive care unit. J Trauma. 2009;67(3):430-433. 19. Welsh CA, Flanagan ME, Ebright P. Barriers and facilitators to nursing handoffs: recommendations for redesign. Nurs Outlook. 2010;58(3):148-154. 20. Arora VM, Manjarrez E, Dressler DD, Basaviah P, Halasyamani L, Kripalani S. Hospitalist handoffs: a systematic review and task force recommendations. J Hosp Med (Online). 2009;4(7):433-440. 21. Delmarva Foundation and the Maryland Patient Safety Center for the Handoffs & Transitions Learning Network. Strategies to improve handoffs. http://www.marylandpatientsafety.org/html/learning_network/hts/materials/res ources/handoffs/HandoffsStrategiesChart.pdf. Published 2007. Accessed October 24, 2011. 22. Bolanos R. Bedside briefings: Miami Childrens Hospital handoffs happen with patients included. Nurs Spect (Fla Ed). 2008;18(2):22-23.
Actions that limit the negative impact of human factors are most likely to improve handoff communication,21 including limiting reliance on memory, avoiding interruptions, limiting excess noise, standardizing the process, involving families by using bedside report,22 and providing an opportunity for information to be verified through a repeat-back process.15,16,19,21 Personnel briefings or huddles can be beneficial when handoffs occur mid-shift (eg, when a patient is transferred in from another hospital, admitted directly after birth, or has a change in personnel due to increased acuity).21 Health care personnel can reduce variation during handoff by adopting a standard process (mnemonic or structured checklist),15 keeping report patient-centered versus task-centered, mapping out the process, using information technology if available,17,20 considering an audiotaped report, and allowing a time for questions and verification face-to-face.21 When handoffs occur because of discharge, transfer to another unit or transfer to another facility, be sure to provide clear medication instructions and reconcile medications across the continuum of care. In general, it is a best practice to supplement verbal communication with standardized forms and checklists and to update policies and procedures to reflect the new process. When an infant is transferred within a hospital or from facility to facility, the sending personnel should provide a verbal report to the receiving unit but consider following it up with a faxed report using a structured format. At discharge, be sure to ask for the parent to repeat back key points to ensure that they are understood.21 Finally, to determine the impact of the process change, measure the impact of the change on adverse events, staff satisfaction, and time management.21 Improving handoff communication has the potential to improve outcomes by reducing preventable errors across the continuum of care for vulnerable

DONNA DOWLING, PHD, RN Section Editor
Implementing Practice Guidelines and Education to Improve Care of Infants With Neonatal Abstinence Syndrome
Katherine Lucas, DNP, APRN, NNP-BC; Robin B. Knobel, PhD, RN
ABSTRACT PURPOSE: To develop and implement a program for the management of neonatal abstinence syndrome (NAS) and the use of the Finnegan Neonatal Abstinence Scoring Tool (FNAST). We evaluated knowledge gain in nurses as a result of implementation of the practice guidelines and education. SUBJECTS: Participants included 68 nurses employed in a neonatal intensive care unit (NICU) at a single facility. DESIGN: A nonexperimental, pretest/posttest study evaluated change in nursing knowledge about NAS and the use of the FNAST after implementation of evidence-based clinical practice guidelines and an educational project. METHODS: Nurses were tested before and after participation in education about NAS. A subset of 10 nurses was evaluated using the FNAST with videos of infants having NAS. RESULTS: Volunteer participation in the NAS educational project occurred in 81% of the NICU nurses. All nurses showed some improvement in scores on the posttest, with 2% to 44% improvement. All 10 nurses who participated in the interactive DVD test scored 90% or more against the FNAST criterion 1 week after participation in the educational project. CONCLUSION: Evidence-based clinical practice guidelines and education around NAS and the FNAST equip caregivers with the necessary tools to consistently and accurately assess an infant with NAS when using the FNAST. KEY WORDS: education, evidence-based clinical practice guidelines, Finnegan Neonatal Abstinence Scoring Tool (FNAST), neonatal abstinence syndrome (NAS), neonates, substance abuse
xposure to substances such as opioids and opioid derivatives can result in neonatal abstinence syndrome (NAS).1 The 2 types of NAS discussed in the literature occur as a result of iatrogenic and passive exposure. Passive exposure, the focus of this study, occurs when the fetus is exposed to opioids or opioid derivatives during the pregnancy, and the infant develops a physical dependence on the substance.2 Neonatal abstinence syndrome is defined as a multisymptoms syndrome with abnormal symptoms of the
Author Affiliations: Department of Nursing, Cape Fear Valley Health System, Fayetteville, North Carolina (Dr Lucas); and Duke University School of Nursing, Durham, North Carolina (Drs Lucas and Knobel). The work occurred at the Cape Fear Valley Health System Neonatal Intensive Care Unit, Fayetteville, North Carolina. The authors declare no conflict of interest. Correspondence: Katherine Lucas, DNP, APRN, NNP-BC, 3937 Nikita D, Hope Mills, NC 28348 (kay@nc.rr.com). Copyright 2012 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0b013e318241bd73
40
central nervous, gastrointestinal, autonomic nervous, and respiratory systems presenting in the infant when transfer of harmful substances from the mother to the fetus abruptly stops at the time of delivery.3 Fetal exposure usually occurs for 1 of 3 reasons: (1) mothers are addicted to opioids, either prescribed or illicit; (2) mothers require prescription opioids for another disease process; or (3) mothers receive methadone therapy or other agents to facilitate safe withdrawal from addiction to prescription or illicit opioids.4 Cord clamping, the catalyst necessary to initiate the cascade of events, causes the abrupt withdrawal of the substance to the infant. Infant metabolism and excretion continues resulting in decreased circulating levels of the substance. When the circulating drug levels reach a critical low, the infant begins to show signs and symptoms of NAS.3 The American Academy of Pediatrics (AAP) reported that 50% to 95% of infants exposed to opioids or opioid derivatives, including heroin and methadone, will develop NAS.5 More recent research describes an increasing incidence of infants exposed to harmful substances prior to birth.2 The appearance
Neonatal Abstinence Syndrome
41
of symptoms in the newborn is unpredictable and is associated with many factors that may occur at birth or up to 4 weeks after delivery.6 Subacute symptoms of NAS can occur as late as 6 months after delivery with neurodevelopmental problems apparent up to at least 12 months of age.4 Adding further to the complications of caring for these infants is the lack of reliability of mothers who abuse substances when self-reporting. Furthermore, polydrug use exacerbates the signs and symptoms associated with NAS and complicate medical management that is already challenging.7 Optimal treatment of this NAS population is hampered by the current lack of evidence-based standardized guidelines and protocols for pharmacologic management and care that promote improved outcomes for patients with NAS.5-9 Successful management is dependent on a number of variables including the medication and dose chosen to facilitate safe withdrawal for the infant, the type of tool used (if any) to measure NAS, and the discretion of the attending physician. In some facilities, the pharmacologic management is dependent on the on-call neonatologist or pediatrician who proceeds without the support of any tool or protocol.10 The current tools for identifying, diagnosing, and managing NAS in infants are inclusive but, when used without suitable education, afford the caregiver too much room for subjectivity.7 It is imperative that the caregiver is knowledgeable about NAS, including etiology, signs and symptoms, pharmacologic management, as well as outcomes.11 Caring for these infants without the necessary tools and education may result in inaccurate scores, inappropriate and ineffective treatment, increased need for pharmacologic treatment, increased length of stay, and increased incidence of poor neurodevelopmental outcomes.2 The ability to provide quality care declines further when the caregiver is undereducated about NAS and the tool used to guide assessment and care.2,5-7 Care of these infants may improve with education about NAS, the use of the appropriate tool, and informative clinical practice guidelines.10 The prevalence of NAS and inconsistencies in care prompted the AAP to develop recommendations for monitoring and treatment of these infants.5 Recommendations outline standards for assessing, managing, and treating the infant with NAS, including the use of 1 of 3 scoring tools: (1) the Finnegan method, (2) the Ostrea system, or (3) the Lipsitz tool.5 Despite the availability of the AAP recommendations, current research suggests the inconsistent use of these standardized guidelines and tools.1 Many facilities continue to treat infants with NAS without adequate education or documented clinical practice guidelines in place.12
for care of the infant with NAS and to provide an educational session for neonatal nurses in our unit around care of the infant with NAS and using the Finnegan Neonatal Abstinence Scoring Tool (FNAST). This research evaluated the improvement in knowledge of nurses participating in the educational session through a pre- and posttest. A subset of nurses was evaluated in their use of the FNAST through completion of an interactive DVD 1 week after the educational session. The specific research questions were as follows: 1. Will delivering an educational program to the nurses in the NICU around NAS and the use of the FNAST result in increased knowledge as evidenced by a higher score on the knowledge test? 2. Will delivering an educational program to the nurses at CFVMC around NAS and the use of the FNAST result in increased accuracy in using the FNAST to score an infant with NAS?
METHODS
This evidence-based research is a nonexperimental, pretest/posttest study designed to evaluate change in nursing knowledge about NAS and the use of the FNAST after implementation of evidence-based practice clinical practice guidelines and a comprehensive educational program.
Setting
The project was implemented in a 44-bed level 3 regional referral NICU. The incidence of NAS in this unit in 2010 represented 40 of 604 admissions (9%) .13 The NICU, labor and delivery unit, and the family-centered care (FCC) units are all located in close proximity and the units work together to provide care for these infants and the mothers. Infants who are at risk for NAS receive care initially in the FCC where the nurses, physicians assistants, and pediatricians provide care. The nurses in FCC have received limited education during their orientation in providing care for the NAS infant and many times the FNAST is inconsistently used to score the opioid-exposed infant. Pediatricians are advised to delay discharge of these infants until at least 7 days of age to provide adequate time for manifestation of signs and symptoms of NAS.1 Neonatologists and neonatal nurse practitioners (NNPs) from the NICU are available for consult when an infant is suspected to have NAS. Request for a NICU consult is made when the FNAST score reaches 8 or greater or if the infant is exhibiting signs and symptoms with the greatest potential for adverse effects.14 The neonatologist or NNP, in consultation with the neonatologist, examines the infant to determine whether admission to the NICU is indicated. Admission to the NICU is necessary when the infant requires pharmacologic management. Nurses, NNPs, and neonatologists provide care of the infant with NAS in the NICU in this facility.
PURPOSE
The researcher implemented an evidence-based practice research project to develop clinical practice guidelines
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Lucas and Knobel
Nurses ranging in experience from new graduates to more than 20 years of neonatal experience receive a 12-week orientation that includes limited education on providing care for the NAS infant. Further learning is achieved when the nurse provides care to the infant with NAS. The FNAST at this facility has general instructions printed on the tool; otherwise, there are no practice guidelines in place. Before beginning the project, 10 charts, representing 40% of the infants with NAS in 2010, were reviewed and inconsistencies in scoring of infants with NAS were found throughout the charts.13 For instance, after administration of morphine, the documented FNAST scores increased on 62% of the charts. Finnegans studies, as well as those of other researchers, have found that inconsistencies in scoring are a common finding and a problem that can be addressed with education.10,14
infants who develop NAS will not require pharmacologic management.5 Furthermore, unnecessary initiation of pharmacologic management is associated with poorer neurodevelopmental outcomes and longer lengths of stay.20
NAS Test
A NAS test was developed to evaluate knowledge of NAS, care of the infant with NAS, and use of the FNAST. The pre- and post-NAS tests are identical and were graded using the same criteria. There are 58 questions on the NAS test, and each has a value of 2 points lending a possibility of 116 points. The pretest assessed the knowledge level of the nurse before delivering the formal education about NAS-related care and the FNAST. A posttest assessed the level of knowledge gained during the educational session. Expert content validity of the knowledge test was obtained through consultation with Loretta Finnegan, MD. Dr Finnegan made suggestions during the development of the test and throughout the final revisions. The test was designed to challenge the caregivers knowledge from etiology of NAS through discharge and to allow the tester some measurable evidence of knowledge gained from the educational offering. A random 4-digit number was assigned to each pair of pre- and posttest, and the tests were disributed with the numbers covered to the researcher to allow comparison of the test results, while keeping the nurses identity concealed.
Sample and Consent

Institutional review board (IRB) approval was obtained through Duke University School of Nursing and Cape Fear Valley Health System (CFVHS) prior to implementation of this project. The neonatal nurses provided the sample to be evaluated for this project. All nurses employed in the NICU were invited to participate in the formal education part of this evidence-based research study. Participation in the pre- and post-NAS testing was optional. Consent was implied when the nurse submitted the completed tests to the researcher. The goal was to test at least 50% of the participants. A subset of nurses from each education session who ranged from novice to expert level in neonatal nursing experience was consented to participate in the use of an interactive DVD (NeoAdvances, Nashville, TN)15,16 exercise where they examined an infant with NAS, using the FNAST for additional evaluation of their performance with the new knowledge.
Formal Education Component

Nursing participation in the education component was voluntary and was delivered as part of the evidence-based
TABLE 1. Content for Clinical Practice Guidelines

Definition Special considerations Purpose Indications/high-risk population Substances of abuse Initial screening Onset of symptoms of withdrawal Importance of early recognition Initial neonatal workup Neonatal abstinence score (the Finnegan Tool) Instructions for scoring The detoxification process Pharmacologic management Feeding Treatment of withdrawal from polysubstance exposure Discharge planning
Procedures
The clinical practice guidelines were developed using instruments from the Appraisal of Guidelines for Research Utilization (AGREE) Collaboration,17 the Conference on Guideline Standardization statement,18 and Instructions for Writing Clinical Practice Guidelines for the National Association of Neonatal Nurses.19 A review of the literature provided the evidence to support the information contained in the clinical practice guidelines. Care is enhanced when the evidence-based clinical practice guidelines integrate information for all levels of providers.5 Now, each nurse and medical care provider has access to the necessary information to provide excellent care to an infant with NAS, from etiology to discharge. The guidelines include the information that incorporates all aspects of NAS from etiology to discharge of the patient (Table 1). Nonpharmacologic or supportive interventions to care for the infant with NAS are included, as 30% of the
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research project. The researcher conducted the formal classroom component to groups of 2 to 17 nurses. The nurses viewed and participated in an interactive DVD15 developed to provide the caregiver an opportunity to assess and score an infant with NAS and then to evaluate those scores with those of the expert. A printed manual16 accompanies the DVD,15 and both are designed to facilitate interobserver reliability. The DVD15 demonstration was followed by formal didactic education on NAS created with PowerPoint (Microsoft 2010, Redmond, Washington) software. The content of the formal education is specific to the care of the patient with NAS in the NICU and was developed from a literature review and the evidencebased clinical practice guidelines that were developed. Each nurse received a copy of the clinical practice guidelines as well as other handouts to keep as a resource and for review of NAS information.
Interrater Reliability Testing

A subset of 10 nurses consented to participate in the interrater reliability testing that took place 1 week after the educational offering. Each nurse independently observed a DVD15 of an infant with NAS and scored the infant, using the FNAST. There are 2 examinations on the DVD,15 and all of the participants viewed and participated in examination 1. The scores on the FNAST are dynamic rather than static so the nurses were given some information such as amount of time sleeping, number of yawns and sneezes as well as some hemodynamic measures they could not assess by viewing the DVD15; otherwise, they assess the infant along with the expert and independently score the infant on the FNAST. After the examination was complete, they watched the evaluation section where the expert reviewed the assessment, evaluation, and the appropriate score. The nurses then compared their scores with the experts scores to determine interrater reliability16 or the ability to reproduce the same score on the same infant at the same time by different observers.
Data Collection
Results were compared for each participants preand post-NAS tests. Each question on the tests was worth 2 points and the scores for matching numbers were entered into an SPSS(19)21 program on a password-protected computer to analyze change in knowledge. The researcher anticipated that at least half of participants, or 34 of the nurses, would have a 10% or more increase in scores, representing an increase in knowledge. Percentage of agreement was calculated for each nurse performing the Finnegan scoring test along with the interactive DVD.15
results of the pre- and post-NAS tests were analyzed to answer the research questions. Research question 1: Will delivering an educational program to the nurses in the NICU around NAS and the use of the FNAST result in increased knowledge as evidenced by a higher score on the NAS test? The researcher compared scores from the NAS test pre- and posteducation and analyzed data, using a matched paired Student t test for a change in knowledge. A 10% or more increase in scores was used to indicate improved knowledge. None of the participants scored 100% correct on the pretest and 3 of the nurses (4%) scored 100% correct on the posttest. All of the participants showed some improvement (2% to 44% improvement) on the posttest scores. Sixty-one of the participants (90%) showed a 10% or more improvement in scores on the posttest, while scores of 7 of the participants (10%) increased by 10% or less (see Table 2). Research question 2: Will delivering an educational program to the nurses at CFVMC around NAS and the use of the FNAST result in increased accuracy in using the FNAST to score an infant with NAS? Ten nurses with less than 1 year to greater than 23 years of neonatal experience consented to participate in the interactive interrater reliability DVD15 1 week following the educational offering. To be considered reliable when using the FNAST, the rater must obtain a score of 90% or more agreement according to the criteria set forth by the developers of the program.16 All 10 nurses achieved a score of 90% or more, which is acceptable interrater reliability according to the program guidelines.16 Four nurses (40%) scored 100% agreement, 5 nurses (50%) scored 95% agreement, and 1 nurse (10%) scored 90% agreement. To determine the consistency or reproducibility of quantitative measurements made by different observers measuring the same quantity, intraclass correlations were run between each of the 10 nurses and the expert. The intraclass correlations were significant with a range of 0.996 to 1.00 for the 10 nurses. The evaluations submitted by the nurses were excellent. The comments were mostly positive, and they offered suggestions that will improve future educational offerings on NAS. Many of the comments indicated that the educational opportunity supplied them with information that would enable them to assess and score infants with NAS more consistently and appropriately. They commented that the definitions of the symptoms provided them with information that make the tool a more objective means to assess and score infants with NAS.
RESULTS
After nurses completed the education program and the new clinical practice guidelines were implemented,
DISCUSSION
The FNAST is a comprehensive and objective tool developed to monitor the passively addicted infant with a method that has proven reliability and can be
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TABLE 2. Neonatal Abstinence Syndrome Test Results

N Results Pretest Posttest Pretest Posttest 68 68 7 7 N 54.00 88.00 88.00 96.00 Minimum 104.00 116.00 104.00 108.00 Maximum 85.00 104.00 96.00 102.00 Mean SD Minimum Maximum Mean
Pretest and posttest scores with 10% improvement
Descriptive statistics for total scores Score change Posttest Pretest Valid N (listwise) 68 68 68 68 Paired Differences 95% Confidence Interval of the Difference 21.51837 17.12869 2.00 88.00 54.00 44.00 116.00 104.00 19.3235 104.5000 85.1765 9.06764 6.28075 10.32739
Mean Paired samples test: Pair 1 pre-post 19.32353
SD 9.06764
SE Mean 1.096764
t 1.7573
df 67
P (2-tailed) 0.000
easily taught to neonatal nurses.14 The techniques learned by using the Finnegan method are proven to guide the caregiver in assigning appropriate and consistent scores.14 If the caregiver is able to assign appropriate scores on the FNAST, then the provider will use the scores to plan effective treatment, resulting in reduced need for pharmacologic treatment, decreased length of stay, and decreased incidence of poor neurodevelopmental outcomes.7 Sixty-eight of 84 nurses attended the educational offering, representing 81% of the nurses employed in the NICU in this facility, even though they did not receive financial compensation for attendance and attendance was not mandatory. All of the nurses who attended consented to pre- and posttesting, and all nurses achieved improved knowledge from the education. Recent research shows that providing education to nurses can result in increased knowledge, improved professional practice, and improved patient treatment goals.22 Education can also equip nurses with the necessary knowledge to care for patients with complex medical problems like NAS.23 Furthermore, providing nurses with specific information about a medical problem is correlated with improved adherence to best practice.24 One week after the educational offerings were completed, 10 nurses participated in the interrater reliability testing, all 10 of the nurses (100%) scored 90% or more, achieving reliability status according to
the criteria.16 Practice-based learning techniques such as interactive exercises are correlated with improved practice procedures as well as improved patient outcomes.25 The 1-week delay between the education offering and the interrater reliability testing offers some indication of knowledge retained as all of the participants achieved reliability status.25
Strengths and Limitations

This evidence-based practice research project exemplifies a foundational program designed to improve care of infants with NAS by developing and implementing evidence-based clinical practice guidelines and an education program specific to the care of the NAS patient and use of the FNAST. Supplying caregivers with the necessary tools and providing education on the proper use of those tools are essential in providing quality care and improving outcomes for this population of patients. The expert resources utilized to support the project strengthened the content validity of the project. The posteducation evaluations were excellent offering evidence of buy-in of the staff and sustainability of the project. A number of limitations are also recognized. First, the findings in the study may be overly positive, as the results do not represent knowledge retained over any length of time. The nurses were tested just prior to the educational offering and then again at the end of the educational offering. The interactive DVD testing was performed 1 week after the educational offering giving
45
limited indication of information retained. Second, the FCC staff is directly involved in caring for the NAS patients and was not included in the initial part of the study because of limited time and resources for this project. Also, we were unable to include clinical outcomes as a component of this project because of time constraints and low populations of NAS infants at the time of this project. Clinical outcomes such as consistency of scores, consistency of care, and length of stay may provide statistical evidence as to the impact this quality improvement project may have had on this patient population.
at Duke University School of Nursing. No grant support was provided.
References
1. Berens RJ, Meyer MT, Mikhailov TA, et al. A prospective evaluation of opioid weaning in opioid-dependent pediatric critical care patients. Pediatr Anesth. 2006;102:1045-1050. 2. DApolito K. Neonatal opiate withdrawal: pharmacologic management. Newb Infant Nurs Rev. 2009;9(1):62-69. 3. Matic A. Neonatal abstinence syndromecase report. Acta Med Med. 2008;47(1):55-59. 4. Jansson LM, Velez M, Harrow C. The opioid exposed newborn: assessment and pharmacologic management. J Opioid Manag. 2009;5(12):47-55. 5. American Academy of Pediatrics Committee on Drugs. Neonatal drug withdrawal committee on drugs. Pediatrics. 1998;101(6):1079-1088. 6. Crocetti MT, Amin DD, Jansson LM. Variability in the evaluation and management of opiate-exposed newborns in Maryland. Clin Pediatr. 2007;46:632-635. 7. Kuschel C. Managing drug withdrawal in the newborn infant. Semin Fetal Neonatal Med. 2007;2:127-133. 8. Osborn DA, Jeffery HE, Cole MJ. Opiate treatment for opiate withdrawal in newborn infants. Cochran Database Syst Rev. 2010;(10):CD002059. 9. Seligman NS, Salva N, Hayes EJ, Dysart KC, Pequignot EC, Baxter JK. Predicting length of treatment for neonatal abstinence syndrome in methadone exposed neonates. Am J Obstet Gynecol. 2008;199(4):396 e1-396 e7. 10. OGrady MJ, Hopewell J, White MJ. Management of neonatal abstinence syndrome: a national survey and review of practice. Arch Dis Child Fetal Neonatal Ed. 2009;94:249-252. 11. Ebner N, Rohrmeister K, Winklbaur B, et al. Management of neonatal abstinence syndrome in neonates born to opioid maintained women. Drug Alcohol Depend. 2007;87:131-138. 12. Sarkar S, Donn SM. Management of neonatal abstinence syndrome in neonatal intensive care units: a national survey. J Perinatol. 2006;26:15-17. 13. Neodata. Cape Fear Valley Health System neonatal intensive care unit administrative database. Accessed January 2010. 14. Finnegan LP, Connaughton JF, Kron RE, Emich JP. Neonatal abstinence syndrome: assessment and management. Addict Dis An Int J. 1975;2(1):141-158. 15. DApolito K, Finnegan, L. Assessing Signs & Symptoms of Neonatal Abstinence Using the Finnegan Scoring Tool: An Inter-Observer Reliability Program [DVD]. Nashville, TN. NeoAdvances, LLC; 2010. 16. DApolito K, Finnegan L. Assessing Signs & Symptoms of Neonatal Abstinence Using the Finnegan Scoring Tool: An Inter-Observer Reliability Program Instructional Manual. 2nd ed. Nashville, TN: NeoAdvances, LLC; 2010. 17. The AGREE Collaboration. Development and Validation of an international appraisal instrument for assessing the quality of clinical practice guidelines: the AGREE project. Qual Saf Health Care. 2003;12:18-23. 18. Shiffman RN, Shekelle P, Overhage M, Slutsky J, Grimshaw J, Deshpande AM. Standardized reporting of clinical practice guidelines: a proposal from the Conference on Guideline Standardization. Ann Intern Med. 2003;139(6):493-500. 19. National Association of Neonatal Nurses. Instructions for writing clinical practice guidelines for the National Association of Neonatal Nurses. http://www .nann.org/uploads/files/Instructions_for_Writing_Clinical_Practice_Guidelines.pdf . Published 2009. Accessed March 14, 2010. 20. Velez M, Jansson LM. The opioid dependent mother and newborn dyad: nonpharmacologic care. J Addict Med. 2008;28(3):113-120. 21. SPSS [Computer program]. Version 18. Chicago, IL: SPSS Inc; 2010. 22. Forsetlund L, Bjorndal A, Rashidian A, et al. Continuing education meetings and workshops: effects on professional practice and health care outcomes (Review). Cochrane Database Syst Rev. 2009;(2):CD003030. 23. Marzlin K. Structuring continuing education to change practice: a nurse-driven initiative. Dimens Crit Care Nurs. 2011;30(1):41-52. 24. Insaf A, Zencirci AD. Knowledge and management of pressure ulcers: impact of lecture-based interactive workshops on training of nurses. Adv Skin Wound Care. 2011;24(6):262-266. 25. Moore DE, Green JS, Gallis HA. Achieving desired results and improved outcomes: integrating planning and assessment throughout learning activities. J Contin Educ Health Prof. 2009;29(1):1-15.
Implications for Future Practice and Research

The next phase of this project is to provide the clinical practice guidelines and education to the nurses in the FCC unit, which is currently taking place. The presentation will be offered on the intranet education server to allow the nurses an opportunity to review the information as needed and once the education is completed throughout the NICU and the FCC unit. The IRB approval has been obtained from CFVHS to follow through with retrospective chart reviews to evaluate for any change in clinical outcomes correlated with the implementation of the clinical practice guidelines and education of the nurses. Data from the chart reviews will offer evidence as to the impact of this project on the clinical outcomes of this population of patients. The chart reviews will also offer more substantial evidence about knowledge retained as a result of the education component.
Acknowledgments
We thank Loretta Finnegan, MD, for her support and guidance through this project as well as her expert content validity verification of the NAS and FNAST test, and Keith J. Gallaher, MD, and H. Scott Cameron, MD, members of this Capstone committee, for their guidance and support throughout this project. We also thank the neonatal nurses at CFVHS for their support and dedication to this project; Margy Priddy, RN, CFVHS, for her help with training and development; as well as Beth Langley, PhD, RN, CCRN-CSC, coordinator of nursing research and evidence-based practice at CFVHS, for her guidance through the IRB process. Lastly, we also thank Julie Thompson, PhD, RN, for her statistical consultation

DEBRA DOWLING, PHD, RN Section Editor
Enteral Feeding Practices in the NICU

Results from a 2009 Neonatal Enteral Feeding Survey
Katherine E. Gregory, PhD, RN; Teresa C. Connolly, BSN, RN
ABSTRACT PURPOSE: The purpose of this study was to examine the current management of the enteral feeding regimens of premature infants cared for in the neonatal intensive care unit (NICU). SUBJECTS: The study included responses from 70 neonatal nurses who participated in a 2009 Neonatal Enteral Feeding Survey distributed electronically to the National Association of Neonatal Nurses membership. These respondents were representative of both the United States and Canada, with 29 US states represented. The majority of respondents (95.7%) reported current nursing employment in a level III NICU. DESIGN: Survey research was used in this exploratory study. The survey, Enteral Tube Feeding Practices in the Neonatal Intensive Care Unit, was developed in collaboration with expert neonatal nurses and nutritionists, pilot tested, and distributed via electronic means. METHODS: Survey research was conducted according to the Dillman methodology. Data analysis included descriptive statistics and univariate analysis of variance assessing for significant differences in specific neonatal feeding practices reported. Thematic analysis was used to analyze the qualitative data reported. OUTCOME MEASURES: The outcome measures included the survey responses to the questions asked about the implementation of an enteral feeding protocol and various aspects of enteral feeding practices in the NICU. RESULTS: The majority of participants (60.9%) reported that an enteral feeding protocol was implemented in practice, but that it was inconsistently followed because of individual physician or nurse practice patterns, or highly individualized feeding plans required of specific clinical care needs of the patient. Respondents indicated that gestational age was the leading criteria used to initiate feedings, and patent ductus arteriosis treatment was the primary contraindication to enteral feedings. The leading factor reported to delay or alter enteral feedings was the presence of gastric residuals. Survey data indicated that other contraindicating factors to enteral feeding are variable across NICUs and, as reported, are often inconsistent with the current research published to date. CONCLUSIONS: Research is needed to provide a foundation on which to develop effective enteral feeding protocols that are appropriate for the diversity of infants cared for in the NICU. Such research findings will culminate in the development and implementation of enteral feeding protocols in the NICU, which will result in improved nutrition, growth, and development outcomes for premature infants. KEY WORDS: clinical protocols, neonatal enteral feeding, nutrition, premature infant, survey research
Author Affiliation: W. F. Connell School of Nursing, Boston College, Chestnut Hill, Massachusetts. The work was conducted at Boston College, W. F. Connell School of Nursing, Chestnut Hill, Massachusetts. The work was supported by a Research Enrichment Grant, awarded from Boston College. The authors declare no conflict of interest. Correspondence: Katherine E. Gregory, PhD, RN, W. F. Connell School of Nursing, Boston College, 140 Commonwealth Ave, Chestnut Hill, MA 02467 (katherine.gregory.2@bc.edu). Copyright 2012 by The National Association of Neonatal Nurses DOI: 10.1097/ANC.0b013e3182425aab
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remature infant birth is one of the most significant unsolved problems in maternal child health. It is the leading cause of infant mortality and morbidity in many countries of the world.1 Implementation of improved biomedical technologies has increased the premature infant survival rate from 15% to 75% over the past 20 years.2 This increase in survival has resulted in a new host of clinical questions including how to meet the early nutritional needs of premature infants.3,4 Early nutrition, specifically nutrition delivered to low-gestational-age infants via enteral means, plays a critical role in preventing comorbidities during the neonatal period and ensuring adequate childhood growth and development.5
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Premature infants cared for in the neonatal intensive care unit (NICU) have unique nutritional needs that vary on the basis of gestational age, metabolic state, and physiologic complications that may arise during the neonatal period.6,7 The nutritional management of premature infants is complicated by an immature gastrointestinal (GI) system prone to necrotizing enterocolitis (NEC)4 and an immature suck, swallow, and breathe pattern preventing nutrition by mouth until approximately 34 weeks of gestational age.8 For these reasons, practice patterns related to enteral feedings are a critical issue of concern to nurses caring for premature infants in the NICU. Surprisingly, little is known about current practice patterns pertaining specifically to enteral feedings in the NICU.9 Thus, the aim of this study was to examine the current management of enteral feeding practice patterns as reported by neonatal nurses. Using survey research, neonatal nurses were queried on early feeding practices, specifically those related to the enteral feeding regimen. The results report common practices and underscore variability and limited consensus among neonatal clinicians on how to initiate and advance feedings to ensure optimal growth and development during the neonatal period.
BACKGROUND
Premature birth places the GI system at high risk of disease and makes it difficult to meet early nutritional needs, which are essential for growth and development throughout infancy and into childhood.4,7 Several factors associated with the premature GI system result in a need to deliver early nutrition via enteral means. However, the optimal approach to providing premature infants with adequate nutrition via enteral means remains poorly understood. Much of the research conducted on aspects of the enteral feeding regimen is outdated, and clinical protocols that have been developed lack evidence and ongoing evaluation. A brief overview of the premature GI system and aspects of the enteral feeding practices are presented here.
which delays oral feeding success and requires the administration of nutrition via enteral means prior to this age.8,10,12 Esophageal pressure matures with increasing postconceptual age, leaving the infant at risk of reflux.13 Gastric emptying is affected not only by gestational age, with transit through the gut observed at approximately 30 weeks, but also by the type of nutritional substrate present in the gut.11 Human milk has been shown to facilitate gastric emptying, while feedings higher in energy density, fat, long-chain triglycerides, and dextrose delay gastric emptying.14,15 Intestinal transit or motility is dependent on complex interdigestive migrating motor complexes, which are not fully functional in the premature infant until approximately 34 to 35 weeks of gestation.10,12,16,17 The physiologic attributes of the premature GI system play a role in the nutritional and growth deficits observed in the premature infant patient population.18,19 Our inability to effectively utilize the intestine for adequate nutrition requires the use of parenteral nutrition (PN) via intravenous means. Parenteral nutrition infusion has been associated with intravenous infiltrations that are dangerously caustic, often causes long-term damage to skin and nerves, and has been associated with septicemia.20 The risks associated with PN underscore the need to provide optimal enteral feeding to premature infants.9,20
INITIATION AND ADVANCEMENT ENTERAL FEEDINGS
OF
The Premature GI System and Implications for Feeding and Nutrition

As an organ of digestion and absorption, the premature GI system provides the neonate with inadequate motor and motility function.4,10,11 Aspects of motor and motility function that are important to feeding include the following: a coordinated suck, swallow, breathe response; increased lower esophageal pressure; appropriate gastric emptying; and intestinal transit at a rate that facilitates nutrient absorption.11 These aspects of GI function mature at varied developmental ages. A coordinated suck and swallow is typically present at approximately 34 weeks of gestation,
Determining the optimal time to initiate enteral feedings has been the aim of several studies.21,22 Evidence exists suggesting that minimal amount of early enteral nutrient delivery, ideally maternal breast milk via bolus enteral-feeding method, enhances premature infant growth and maturation of the GI system. Furthermore, research has shown that early enteral feeding results in significantly greater energy intake, weight and head circumference gain, fewer episodes of culture-confirmed sepsis, fewer days of PN, improved tolerance of full milk feeds, reduced requirement of supplemental oxygen, and earlier discharge home.21 Withholding initiation of enteral feedings has not been shown to prevent GI morbidities such as NEC. Thus, the risks associated with potential GI morbidity versus ensuring that premature infants attain adequate nutrition and growth must be considered in the initiation and advancement of enteral feedings.23,24 Clinicians have long questioned aggressive versus more conservative approaches to advancing enteral feedings. Case-controlled studies have investigated the role advancing volumes of enteral feeding play in feeding tolerance, growth, development, and incidence of complications. On the basis of initial
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findings, researchers recommended that the daily increase in enteral feedings not exceed 20 mL/kg per day.25 However, more recent findings have indicated that advancing feedings at a rate of 30 mL/kg per day are as safe as 20 mL/kg per day.26,27 In this study, infants in the rapidly advancing group achieved fullvolume feedings sooner, regained birth weight faster, and had fewer days of intravenous fluids, all without a significantly increased risk of NEC. Concerns that rapidly advancing feeding protocols are associated with an increased incidence of NEC must be weighed against the evidence, which shows that for some infants, the rate of feeding advancement does not play a role in complications. Greater study of the initiation and advancement of enteral feeding is required to determine the most advantageous approach.
Type of Enteral Feeding: Human Milk versus Infant Formula

The risks and benefits associated with the type of enteral feeding highlight the importance of providing premature infants with human milk. Human milk is composed of numerous immunoprotective factors such as immunoglobulins, lysozyme, lactoferrin, macrophages, lymphocytes, and neutrophils.28 It is likely that the attributes of human milk play an important role in inhibiting bacterial growth and controlling inflammation and ischemic injury, as well as accelerating mucosal repair due to its mitogenic potential.29 The largest and most widely cited study to compare human milk with infant formula found that infants exclusively fed formula were 6 to 10 times more likely to develop NEC than those fed human milk alone and 3 times more likely than those who received formula with some human milk.30 Evidence exists to promote early initiation of enteral feeding with human milk as part of infantfeeding protocols. Nurses in the NICU aiming to provide optimal care to premature infants need to understand current practice patterns pertaining to enteral feeding. Thus, the purpose of this study was to report current enteral feeding practices via survey research. The study findings reported herein contribute to this understanding and begin to address research questions relevant to current enteral feeding practices and how enteral feeding protocols vary across different NICU settings.
METHODS
Survey Development and Recruitment Methodology
The survey Enteral Tube Feeding Practices in the Neonatal Intensive Care Unit was developed by the investigator in consultation with a team of expert neonatal registered nurses and a neonatal registered
dietitian. Prior to electronic distribution to the pool of potential participants, the survey was piloted with a sample of neonatal nurses (n 30). Revisions were made to the survey on the basis of the pilot testing, and the survey was formatted for electronic distribution via Survey Monkey. Survey Monkey was selected as the best means to distribute the survey via electronic mail to ensure the largest, most representative sample of subjects. The survey comprised 28 questions. Questions about the descriptive characteristics, such as size and highest level of care provided in the participants NICU, were included. Questions pertaining to the major emphasis of the survey, current enteral feeding practice patterns, included whether or not the participants NICU had a protocol, and if so, how the protocol was developed and implemented, and whether or not it was strictly adhered to in practice. Participants were asked about the clinical criteria that are used to determine initiation, delay, and advancement of enteral feeding and about the specifics of enteral feeding administration (ie, bolus vs continuous, frequency of feeding, type of feeding, and nutritional fortification added to feeding). Finally, participants were asked to report the volume at which patients were considered to be at full feeds and how PN was discontinued. The survey was made available to neonatal nurses through the listservs of the National Association of Neonatal Nurses (NANN) after the PI was given permission to use the listservs for the purpose of this research study. The survey was specifically distributed to the advanced practice (n 570), education (n 558), NNP faculty (n 226), research (n 535), and staff nurse (n 779) listservs maintained by NANN. Members of NANN may be included on more than 1 listserv and, thus, might have received the survey from more than 1 e-mail distribution. However, it was not feasible to develop a mechanism that would ensure that members who were part of multiple listservs receive only 1 e-mail regarding the survey. Furthermore, the likelihood that individuals would complete the survey more than once was thought to be low. Online recruitment was used, because of the ability to collect large amounts of data in a confidential manner. The recruitment methodology and informed consent procedure for electronic survey research were based on the Dillman methodology.31 This methodology involves sending an e-mail on day 1 introducing the study to prospective participants and a follow-up e-mail encouraging participation in the study on day 4.31 Participants indicated consent electronically, before completing the survey questions. All survey responses were anonymous. The PI was the sole individual with access to the survey data and ensured that Internet Protocol addresses were
49
not collected by Survey Monkey. The PI downloaded the survey responses and, in doing so, was able to ensure anonymity of site and participant responses, which were never linked to identifying information in order to maintain security and confidentiality of all responses. The investigators contact information was included with the e-mail correspondence, if prospective participants wished to ask any questions regarding survey. The institutional review board approval was obtained before conducting this study.
Study Population
The study population comprised neonatal nurses who were members of NANN. Nurses in NANN represent a population within neonatal nursing who are most likely to be engaged in practice and interested in participating in survey-based research. Additional inclusion criteria required of participants in this study were English literacy and computer access.
Data Analysis
Data collected from the survey were downloaded from Survey Monkey to SPSS 18.0. Data analysis included quantifying response rates for each question, as well as descriptive statistics and nonparametric techniques (ie, chi-square) assessing for significant differences in specific premature neonatal feeding practices reported. Thematic analysis was used to interpret the qualitative data reported.
RESULTS
Demographic Characteristics of Survey Respondents and NICU Practice Patterns
Table 1 presents a summary of the demographics of the survey respondents (n 70). These respondents were representatives of both the United States and Canada, with 29 US states represented, the majority (95.7%) of which reported current nursing employment in a level III NICU. The study did not limit the number of staff who could have submitted from a single unit, as sample recruitment was based solely on the NANN listserv membership and all study participation was anonymous. Participants completing the survey had the option, but were not required, to identify the name of their hospital and/or the location of the city and state of their hospital. Thirty-six participants provided the name of their hospitals, and an additional 45 provided the city and state locations of their hospitals. None of the reported hospital names were the same and only 2 city and state locations reported were the same. These findings suggest that the sample was drawn from a wide variety of units and that the data are not biased by responses from multiple staff from the same NICU. The vast majority of these respondents answered all survey questions.
More than half (60.9%) of the respondents reported that their NICU had implemented an enteral feeding protocol. However, of these respondents, less than half (26.6%) reported adherence to that feeding protocol and a third (33.9%) reported that the feeding protocol did not apply to all NICU infants. The survey allowed for qualitative data to be collected in response to the follow-up question: Please describe why the feeding protocol or guidelines are not adhered to. Three main themes emerged from the qualitative data that were individual clinical care needs of the patient, practice patterns of the physician, and practice patterns of the nurse. A summary of these responses is highlighted in Table 2. Survey respondents were also asked about how and when their enteral feeding protocols were developed. Three main themes emerged from these qualitative data: evidence-based practice, interdisciplinary collaboration, and continuous modification. Selected responses are included in Table 3. Nonparametric statistical tests, namely chi-square, were conducted to determine whether the reported presence of an enteral tube feeding protocol or guideline was related to the size of the NICU (number of beds) or who was reported as determining when changes were made to the tube feeding protocol. To prevent the chi-square from artificial inflation, variables with low frequency counts (ie, number of beds) were collapsed into adequate groups sizes (see Table 1.) These variables were not significantly related to the reported implementation of an enteral tube feeding protocol or guideline in practice.
Enteral Feeding Practices

Table 4 summarizes the reported practices on initiation of and contraindications to enteral tube feedings for premature infants. The leading criterion for initiating enteral feedings was gestational age (74.3%), followed by infant weight (54.3%). Leading contraindications to enteral feedings were patent ductus arteriosis (PDA) treatment (70.0%) and administration of vasopressors (60.0%). Respondents were then asked yes/no questions to determine criteria that delay or alter the administration of enteral feedings. Gastric residuals (92.9%) were the most common reason to delay or alter enteral feedings. Tables 5 and 6 provide a summary of clinical practices pertaining to enteral feeding. As noted in the tables, the majority of respondents administered enteral feedings by bolus (81.4%), every 3 hours (89.5%), and used tolerance of trophic feedings (85.7%) and presence of gastric residuals (70%) as indications to advance feeding volumes. The remaining criteria pertaining to how enteral feedings are advanced were variable and were reported as determining factors less than 40% of the time. Breast milk was administered as the first feeding the majority of the time (75.4%).
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TABLE 1. Demographic Characteristics of Respondents and Institutions

Survey Question What is the highest level of care provided in your NICU? (n 69) How many beds are in your NICU? (n 70) Response Level II Level III 20 20-30 30-40 40-50 50 Yes No Unsure Yes Most of the time Some of the time No Not applicable Yes No Not applicable Yes No Not applicable MD NNP RN RD Proportion of Respondents, % 4.3 95.7 20.0 22.9 11.4 18.6 27.1 60.9 37.7* 1.4 26.6 26.1 10.1 2.9* 34.8* 48.4 33.9 17.7 63.1 12.3 24.6 88.6 75.7 34.3 25.7
Does your NICU have a feeding protocol or guideline? (n 69) Do you strictly adhere to this feeding protocol or guideline in your daily practice? (n 69)
Does the protocol apply to all infants? (n 62) Does the protocol include delivery of breast milk? (n 65) Who determines when changes are made to the tube feeding regimen? (respondents selected all that apply) (n 70)
*A total of 37.7% of respondents reported not having a feeding protocol or guideline. This number corresponds to the follow-up question. Do you strictly adhere to this feeding protocol or guideline in your daily practice, where a total of 37.7% of respondents reported no or not applicable.
DISCUSSION
Implementation of and Adherence to Enteral Feeding Protocols
Nutrition administered via enteral means is required of the vast majority of critically ill premature infants. However, evidence suggests that enteral feeding practices in the NICU are highly variable and many premature infants do not meet their nutritional goals.1,32,33 Literature suggests that the development and implementation of a research-based feeding protocol or guideline improves the nutritional intake of the infant and results in more optimal clinical outcomes that are less variable.32,34-37 Specifically, the implementation of feeding guidelines or a specific protocol has been shown to result in fewer NPO days, improved nutrient and growth outcomes, a decrease in the length of hospital stay, and a decrease in the incidence of NEC.38,39 While slightly over half of the survey respondents in this study indicated that a protocol was in place within their NICU practice setting, the degree to which the protocol was followed in practice was highly variable.
Variability in adherence to a protocol is likely to result in fluctuations in care. Individual clinical care needs of the patient, presumed practice patterns of the physician, and practice patterns of the nurse were highlighted by the survey respondents as reasons why an implemented feeding protocol was not adhered to in daily practice. These findings indicate that there is room to improve on the development and implementation of research-based feeding protocols in the NICU, as discussed by Hans et al9 in their 2006 survey on nutritional practices in the NICU. The development and implementation of any clinical practice protocol are a significant undertaking and, under ideal circumstances, require a long-term commitment from a multidisciplinary team.40 The qualitative data generated by this study substantiate these findings, as outlined in Table 3. Furthermore, providing adequate nutrition to critically ill, low-gestational-age infants is highly complex and will likely require more research to guide the multiple decision points that are components of an enteral feeding protocol. Ideally, this research will be conducted in tandem with studies on how to effectively develop and promote adherence to an enteral feeding protocol.
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TABLE 2. Reasons Why Feeding Protocol Not Adhered to in Daily Practice

Primary Reason Individual clinical care needs of the patient Qualitative Survey Response (Specific Quotes Reported by Survey Respondents) Clinical reasons based on infant condition. Individualized care to meet infant illness needs. Variations may be based on individual infant feeding tolerance. Our practice is guided by the stability and gestational age of the baby. Practice patterns of the physician Change based on decision of attending with sound clinical judgment. Some physicians use the guideline and others dont consistently. Different physicians, different opinions, especially r/t indomethacin use, bp status, umbilical lines, residuals, sometimes sepsis. Practice patterns of the nurse It seems that people have their own ideas. Those of us with many years of clinical practice develop our own preferences and individualize the practice more. It seems to me that after we have a NEC outbreak, people go slower on feeding advancement for a period of time. Then, as we dont have NEC, people get more reckless and advance feedings faster. New and temporary providers uninformed about the protocol. Staff use work-a-rounds to make things simpler for their practice, not realizing that feeding protocols are there for their patient safety.
Enteral Feeding Practices

Studies have indicated that the initiation of early enteral feedings is protective to the developing premature GI system and likely plays a role in mitigating later GI disease and sepsis, regardless of the gestational age of the infant.22,26,39 As reported in this study, the initiation of enteral feeding was determined primarily by gestational age and birth weight. Contraindications to enteral tube feeding have been reported as contingent on several clinical factors such as treatment for a PDA, presence of umbilical
catheters, need for vasopressor medication, and oxygen consumption.39,41,42 Based on the findings generated from this study, PDA treatment and use of vasopressors are leading contraindications to enteral feedings. These findings are in line with those generated by a 2006 neonatal nutritional survey.9 Other significant clinical aspects that play a role in enteral feeding are the management of umbilical catheters. Based on current findings, delaying feedings for specific clinical needs such as umbilical artery catheters is not warranted.42 However, more
TABLE 3. Enteral Feeding Protocol Development and Implementation

Qualitative Survey Response (Specific Quotes Reported by Survey Respondents) Evidence-based practice We took California perinatal quality care collaborative best practices, Lucile Packard Childrens Hospital feeding guidelines, and Childrens Hospital of Philadelphia guidelines and adapted to make our own. We were part of the Vermont Oxford Quality Improvement initiative. Developed via resources: Handbook of Neonatal Intensive Care, G. Merenstein and S. Gardner 2006 and Core Curriculum for Neonatal Intensive Care Nursing, M. T. Vreklan and M. Walden, 2004. Interdisciplinary collaboration Our enteral feeding protocols were developed in collaboration with nutrition services, neonatology, and nursing. Through a lengthy interdisciplinary task force. By a multidisciplinary council of nurses, APNs, and neonatologist. Continuous modification A protocol was initiated in 1979 and has been reviewed every 34 years based on evidence-based findings and task force recommendations. Developed 1520 years ago based on traditional methods & updated every few years as evidence-based guidelines became available.

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TABLE 4. Reported Practices on Initiation of and Contraindications to Tube Feedings (n 70)

Survey Question* Which of the following criteria are used to initiate tube feedings? Gestational age Weight Which of the following criteria are contraindications of tube feeding? PDA treatment Vasopressor Presence of umbilical catheters Oxygen level Gestational age Weight Which of the following criteria are indications to delay or alter tube feedings? Gastric residuals Change in stool status Change in CV support Abdominal girth Change in respiratory support
Abbreviations: CV, cardiovascular; PDA, patent ductus arteriosis. *Respondents were directed to select all criteria that apply.
Proportion of Survey Respondents Who Reported Yes to Selected Criteria, %
74.3 54.3 70.0 60.0 31.4 10.0 7.1 4.3 92.9 75.7 71.4 68.6 51.4
than one third of study respondents reported that the presence of umbilical catheters was a contraindication to enteral tube feedings, meaning that feedings are held because of the presence of these catheters. This is a finding similar to that reported by Hans et al, regarding the proportion of respondents who determined umbilical arterial catheters to be a contraindication to enteral feeding.9 The significance of gastric residuals during the early enteral feeding advancement of premature infants has not been supported in the literature.43 Rather, it has been shown that the critical residual volume is above 3 mL and that specific attributes (ie, color) of the residual are not negatively correlated with attainment of feeding volume at day 14.43 In the absence of other clinical signs and symptoms, the advancement of feeding volumes should not be delayed on the basis of the presence or characteristics of gastric residuals alone.43,44 Of note, 92.9% of respondents indicated that residuals were criteria that were used as indications to delay or alter feedings and 70% of the respondents in this study indicated that gastric residuals were an indication used to determine how feeding volumes were advanced. The role that gastric residuals play in the feeding status of premature infants warrants further study, as
there is significant inconsistency between the study findings published to date and the current practice reported in this study. Research has shown that early feeding with human milk, ideally maternal breast milk, is the most ideal nutrition for premature infants.22,30,45,46 Human milk not only is protective against GI diseases such as NEC but plays a pivotal role in early bacterial colonization of the gut and immunologic development and function. In this study, it was reported that breast milk was administered as the first feeding the majority of the time (75.4%), with almost all (89.6%) of respondents reporting the administration of infant formula some of the time at the time of the first feeding. These results indicate that in many cases, more than 1 type of nutritional source is administered to provide adequate nutrition during the early neonatal period. As reported, this may be a reality in current practice due to inadequate maternal milk supply for multiple reasons such as the mothers decision not to pump milk or inadequate pumping volumes of milk. To ensure optimum early nutrition for premature infants that includes the provision of human milk at the first feeding, care teams must prioritize educating mothers about the importance of human milk nutrition for
53
TABLE 5. Reported Clinical Practices Pertaining to Enteral Feeding (n 70)

Survey Question* Are tube feeds administered by bolus? Are tube feeds administered by bolus via pump over specified time? What indications are used to determine how feeding volumesare advanced?* Tolerance of trophic feedings Gastric residuals Weight gain Day of life Gestational age Sepsis Presence of umbilical catheter/lines Oxygen status Return to birth weight
*Respondents were directed to select all criteria that apply.
Proportion of All Respondents Who Reported Yes, % 81.4 67.1 85.7 70.0 37.1 37.1 32.9 24.3 14.3 12.9 8.6
premature infants. In addition, perinatal and neonatal care teams are well positioned to provide support in the way of education, equipment, and other resources necessary to mothers of premature infant so that they may be successful in providing human milk nutrition as early as possible to their child. Probiotics, nonpathologic bacteria that colonize the intestine and alter the microbiota of the gut with potentially beneficial effects and improved immunity for the infant, are likely to become a more common component of neonatal nutrition.4,47,48 For this reason, the survey queried respondents on the current use of these compounds. In this study, it was reported that probiotics are rarely used in clinical practice to date. Research has been conducted on the use of probiotics in the neonatal patient population, which indicate some protective benefit.49,50 However, until a large, randomized clinical trial more firmly establishes the safety and efficacy of these compounds in the premature infant patient population, it is unlikely that these potentially health-promoting nutritional sources will be widely implemented into practice. The survey queried respondents on how full feedings were defined in their practice setting. This question was included in the survey because the definition of full feedings is critical to determining the success of early enteral nutrition and typically dictates when PN can be discontinued. In this study, respondents indicated that full feeding volumes are highly variable, ranging from 100 to 150 mL/kg per day. To date, there has been little published on how full feedings should be defined for the premature infant patient population, and what nutritional steps should
be taken once full enteral feeding volumes are attained. This aspect of feeding and nutrition requires further study, with greater research on the type and quantity of nutrition premature infants require at various points in their care, as well as the most ideal balance between nutrition administered via enteral versus parenteral means.
Study Limitations
Determining the cause and effect of the variables is not possible based on the data collected via a survey mechanism. Other limitations of this study are the sampling frame. It is difficult to assess whether or not the proper number and type of respondents who participated in this study are truly representative of all neonatal nurses. In addition, it was impossible to calculate the true participant response rate in the survey because the survey was not distributed to the entire membership of NANN. Rather, the survey was distributed to specific listservs within the organization, with variable and overlapping membership. An additional limitation related to survey research is participant self-report. In conducting surveys, the investigator must assume that the responding participant understands what the question is asking and that the answer provided is accurately reported by the participant. In the case of surveys distributed via electronic means, there is little to no opportunity for the investigator to interact with the participant to clarify the survey questions asked or participant answer provided. Pilot testing the survey with a population similar to those who will be included in the study, as was done in this study, is one strategy that mitigates this limitation.31
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TABLE 6. Reported Clinical Practices Pertaining to Enteral Feeding

Survey Question How often are boluses administered? (n 67) Response q1h q2h q3h q4h Yes Most of the time Some of the time No Yes Most of the time Some of the time No Yes Most of the time Some of the time No Yes Most of the time Some of the time No 100 mL/kg per day 120 mL/kg per day 150 mL/kg per day No answer Proportion of Respondents, % 0 7.5 89.6 3 14.5 60.9 24.6 0 7.2 2.9 14.5 75.4 6.0 3.0 89.6 1.5 2.9 1.4 7.1 88.6 10 27.1 47.1 15.7
Is breast milk administered for the first feeding? (n 69)
Is donor breast milk administered for the first feeding? (n 69)
Is infant formula administered for the first feeding? (n 67)
Are pre/probiotics added to neonate diet as part of the feeding? (n 68) How are full feeds defined in your NICU setting, in terms of volume? (n 70)
CONCLUSION
Enteral nutrition is a necessary component of newborn intensive care and results in optimal outcomes for premature infants. Neonatal enteral feeding patterns vary greatly on the basis of the time at which feedings are initiated, the volume and rate of advancement of enteral feeding, the type of enteral nutrition provided to premature infants, as well as the contraindications to feeding.26 Clinical research on enteral feeding indicates that premature infants benefit from early enteral feedings by inducing surges in GI system hormones and motility, improved feeding tolerance, shortened duration of PN, and fewer feeding disruptions with better weight gain during the later neonatal period4,26,39 Human milk appears to further enhance these processes. The volume and rate of enteral feeding advancement are important factors in any enteral feeding protocol, yet weakly understood in the context of GI development, infant growth, and incidence of GI complications such as NEC. Protocols for the administration of this type of nutrition have not been widely developed and implemented in NICU practice settings, as reported by NICU nurses. Further research is needed to provide a stronger foundation on which to
develop effective enteral feeding protocols that are appropriate for the diversity of infants cared for in the NICU.
References
1. Eichenwald EC, Start AR. Management outcomes of very low birth weight. New Engl J Med. 2008;358:1700-1711. 2. Bakewell-Sachs S, Blackburn S. State of the science: achievements and challenges across the spectrum of care for preterm infants. J Obstet Gynecol Neonatal Nurs. 2003;32:683-695. 3. Brine E, Ernst JA. Total parenteral nutrition for premature infants. Newborn Infant Nurs Rev. 2004;4:133-155. 4. Neu J. Gastrointestinal development and meeting the nutritional needs of premature infants. Am J Clin Nutr. 2007;85(suppl):629S-634S. 5. Gregory KE. Update on nutrition for preterm and full-term infants. J Obstet Gynecol Neonatal Nurs. 2005;34:98-108. 6. Holden C, MacDonald A. Nutrition and Child Health. London: Harcourt Publishers Limited; 2000. 7. Preedy V, Grimble G, Watson R. Nutrition in the Infant: Problems and Practical Procedures. London: Greenwich Medical media Ltd; 2001. 8. McCain GC. An evidence-based guidelines for introducing oral feedings to healthy preterm infant. Neonatal Netw. 2003;22(5):45-50. 9. Hans DM, Pylipow M, Long JD, Thureen PJ, Georgieff MK. Nutritional practices in the neonatal intensive care unit: analysis of a 2006 neonatal nutrition survey. Pediatrics. 2009;123:51-57. 10. Lebenthal E. Gastrointestinal maturation and motility patterns as indicators for feeding the premature infant. Pediatrics. 1995;95:209. 11. Premji SS. Ontogeny of the gastrointestinal system and its impact on feeding the preterm infant. Neonatal Netw. 1998;17(2):17-24. 12. Medoff-Cooper B, Verklan T, Carlson S. Nutritive sucking and physiologic correlates in VLBW infants. Nurs Res. 1993;42:100-106. 13. Newall SJ, Sarkar PK, Burbin GM, Booth IW, McNeish AS. Maturation of the lower oesophageal sphincter in the preterm baby. Gut. 1998;29:167-172. 14. Ewer AK, Durbin GM, Morgan ME, Booth IW. Gastric emptying in preterm infants. Arch Dis Child Fetal Neonatal Ed. 1994;71(1):F24-F27.

15. Siegel M, Lebenthal E, Krantz B. Effect of caloric density on gastric emptying in premature infants. J Pediatr. 1984;104(1):118-122. 16. Berseth CL. Gastrointestinal motility in the neonate. Clin Perinatol. 1996;23:179-190. 17. Berseth CL. Neonatal small intestinal motility: motor response to feeding in term and preterm infants. J Pediatr. 1990;117:777-782. 18. Cooke RJ, Ainsworth SB, Fenton AC. Postnatal growth retardation: a universal problem in preterm infants. Arch Dis Child Fetal Neonatal Ed. 2004;89:F428-F430. 19. Dusick AM, Poindexter BB, Ehrenkranz RA, Lemons JA. Growth failure in the preterm infant: can we catch up? Semin Perinatol. 2003;27:302-310. 20. Hodge D, Puntis JWL. Diagnosis, prevention, and management of catheter related bloodstream infection during long term parenteral nutrition. Arch Dis Child Fetal Neonatal Ed. 2002;87:F21-F24. 21. McClure RJ, Newell SJ. Randomized controlled study of clinical outcome following trophic feedings. Arch Dis Child Fetal Neonatal Ed. 2000;82(1):F29-F33. 22. Schanler RJ, Shulman RJ, Lau C, OBrien Smith E, Heitkemper MM. Feeding strategies for premature infants: randomized trial of gastrointestinal priming and tube-feeding method. Pediatrics. 1999;103:434-439. 23. Stoll BJ, Kanto WP, Glass RI, Nahmias AJ, Brann AW. Epidemiology of necrotizing enterocolitis: a case controlled study. J Pediatr. 1980;96(3, Pt 1):447-451. 24. Flidel-Rimon O, Branski D, Shinwell ES. The fear of necrotizing enterocolitis versus achieving optimal growth in the preterm infantsan opinion. Acta Paediatr. 2006;95:1341-1344. 25. Anderson DM, Kleigman RM. The relationship of neonatal alimentation practices to the occurrence of endemic necrotizing enterocolitis. Am J Perinat. 1991;8(1): 62-67. 26. Berseth CL, Bisquera JA, Pajc VU. Prolonging small feeding volumes early in life decreases the incidence of necrotizing enterocolitis in very low birth weight infants. Pediatrics. 2003;111:529-534. 27. Caple J, Armentrout D, Huseby V, et al. Randomized controlled trial of slow versus rapid feeding advancement in preterm infants. Pediatrics. 2004;114: 1597-1600. 28. Buescher ES. Host defense mechanisms of human milk and their relations to enteric infections and necrotizing enterocolitis. Clin Perinatol. 1994;21: 247-262. 29. Williams AF. Role in feeding in the pathogenesis of necrotizing enterocolitis. Semin Neonatol. 1997;2:263-271. 30. Lucas A, Cole TJ. Breast milk and neonatal prevention of necrotizing enterocolitis. Lancet. 1990;336(8730):1519-1523. 31. Dillman DA, Smyth JD, Christina LM. Internet, Mail, and Mixed Mode Surveys: The Tailored Design Method. Hoboken, NJ: John Wiley & Sons Inc; 2009. 32. Street JL, Montgomery D, Alder SC, Lambert DK, Gerstmann DR, Christensen RD. Implementing feeding guidelines for NICU patients 2000 g results in less variability in nutrition outcomes. Jpen-Parenter Enter. 2006;30:515-518. 33. Olsen IE, Richardson DK, Schmid CH, Ausman LM, Dwyer JT. Intersite differences in weight growth velocity of extremely premature infants. Pediatrics. 2002;110: 1125-1132.
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34. Braudis NJ, Curley M, Beaupre K, et al. Enteral feeding algorithm for infants with hypoplastic left hear syndrome poststage I palliation. Pediatr Crit Care Med. 2009;10:460-466. 35. Premji SS, Chessell L, Paes B, Pinelli J, Jacobson K. A matched cohort study of feeding practice guidelines for infants weighting less than 1500 g. Adv Neonatal Care. 2002;2:27-36. 36. Premji SS, Pae B, Jacobson K, Chessell L. Evidence-based feeding guidelines for very low-birth-weight infants. Adv Neonatal Care. 2002;2:5-18. 37. Smith JR. Early enteral feeding for the very low birth weight infant: the development and impact of a research-based guideline. Neonatal Netw. 2005;24(5): 9-19. 38. Kamitsuka MD, Horton MK, Williams MA. The incidence of necrotizing enterocolitis after introducing standardized feeding schedules for infants between 1250 and 2500 grams and less than 35 weeks of gestation. Pediatrics. 2000;105:379-384. 39. Hartel C, Haase B, Browning-Carmo K, et al. Does the enteral feeding advancement affect short-term outcomes in very low birth weight infants? J Pediatr Gastr Nutr. 2009;48:464-470. 40. Kuzma-OReilly B, Duenas ML, Greecher C, et al. Evaluation, development, and implementation of potentially better practices in neonatal intensive care nutrition. Pediatrics. 2003;111(4):E461-E470. 41. Leaf A. Early enteral feeding in high-risk preterm infants. Infant. 2007;3(1):27-30. 42. Havranek T, Johanboeke P, Madramootoo C, Carver JD. Umbilical artery catheters do not affect intestinal blood flow responses to minimal enteral feedings. J Perinatol. 2007;27:375-370. 43. Mihatsch WA, von Schoenaich P, Fahnenstich H, et al. The significance of gastric residuals in the early enteral feeding advancement of extremely low birth weight infants. Pediatrics. 2002;109:457-459. 44. Cobb BA, Carlo WA, Ambalavanan N. Gastric residuals and their relationship to necrotizing enterocolitis in very low birth weight infants. Pediatrics. 2004;113:50-53. 45. Sisk PM, Lovelady CA, Dillard RG, Gruber KJ, OShea TM. Early human milk feeding is associated with a lower risk of necrotizing enterocolitis in very low birth weight infants. J Perinatol. 2007;27:428-433. 46. Schanler RJ. Evaluation of the evidence to support current recommendations to meet the needs of premature infants: the role of human milk. Am J Clin Nutr. 2007;85(suppl):625S-628S. 47. Zupancic J. Probiotic use in neonates. Nurs Womens Health. 2009;13(1):59-64. 48. Weizman Z, Asli G, Alsheika A. Effect of a probiotic infant formula on infections in child care centers: comparison of two probiotics agents. Pediatrics. 2005; 115:5-9. 49. Lin HC, Su BH, Chen AC, et al. Oral probiotics reduce the incidence and severity of necrotizing enterocolitis in very low birth weight infants. Pediatrics. 2005;115:1-4. 50. Lin CH, Hsu CH, Chen HL, et al. Oral probiotics prevent necrotizing enterocolitis in very low birth weight preterm infants: a multicenter, randomized, controlled trial. Pediatrics. 2008;122:693-700.

NANN Position Statement 3052
DOI: 10.1097/ANC.0b013e31823b5362
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PAMELA HEABERLIN, MS, NNP-BC Section Editor

Carnitine Palmitoyltransferase-1A Deficiency

Carnitine Palmitoyltransferase-1A Deficiency

RECURRENCE RISK AND GENETIC COUNSELING

Carnitine Palmitoyltransferase-1A Deficiency

TABLE 2. Study Participant Demographics (n 812)

Steamboat Springs, Colorado 6800 ft

Mammoth Lakes, California 7851 ft

Aspen, Colorado 7890 ft

Vail, Colorado 8150 ft

159 171 0 4 2 77 2 247 275 55 313 20 1945-4740

162 158 3 1 1 32 1 263 226 92 301 19 1835-4450

missing data. missing data.

Advances in Neonatal Care Vol. 12, No. 1

Carnitine Palmitoyltransferase-1A Deficiency

TABLE 2. Study Participant Demographics (n 812)

Steamboat Springs, Colorado 6800 ft

Mammoth Lakes, California 7851 ft

Aspen, Colorado 7890 ft

Vail, Colorado 8150 ft

159 171 0 4 2 77 2 247 275 55 313 20 1945-4740