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Second International Conference on Cervical Cancer

Supplement to Cancer

The Role of Nursing in Cervical Cancer Prevention and Treatment

Linda White Hilton, R.N., M.S.N.1 Kathleen Jennings-Dozier, Ph.D., M.P.H.2 Patricia K. Bradley, Ph.D., R.N., C.S.3 Suzy Lockwood-Rayermann, R.N., Ph.D.4 Yvette DeJesus, M.S.N., R.N., A.O.C.N.5 Diane L. Stephens, B.S.N., M.S.N.6 Karen Rabel, B.S.N., M.S.N., A.P.N.7 Judith Sandella, R.N.C., N.P., M.S.8 Alma Sbach, R.N., M.S.N., C.S., F.N.P.8 Catarina Widmark, R.N., R.M.9
1

Ofce of the Special Assistant to the President for Patient Affairs, The University of Texas M. D. Anderson Cancer Center, Houston, Texas. Department of Nursing Programs, College of Nursing and Health Professions, Womans Medical College of Pennsylvania and Hahnemann Medical College, Drexel University, Philadelphia, Pennsylvania. College of Nursing, Villanova University, Philadelphia, Pennsylvania. Harris School of Nursing, Texas Christian University, Fort Worth, Texas. Practice Outcomes Program, The University of Texas M. D. Anderson Cancer Center, Houston, Texas. Nursing Education Ofce, The University of Texas M. D. Anderson Cancer Center, Houston, Texas. Ofce of Protocol Research, The University of Texas M. D. Anderson Cancer Center, Houston, Texas. Center for Biomedical Engineering, The University of Texas M. D. Anderson Cancer Center, Houston, Texas. Department of Nursing, Karolinska Institutet, Stockholm, Sweden. Presented at the Second International Conference on Cervical Cancer, Houston, Texas, April 1114, 2002. Address for reprints: Linda White Hilton, R.N., M.S.N., Ofce of the Special Assistant to the President for Patient Affairs, The University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Blvd., Unit 351, Houston, TX 77030; Fax: (713) 745-4729; E-mail: lwhite@mdanderson.org Received October 31, 2002; accepted January 21, 2003.

Nurses today assume multiple roles, such as patient advocate, care provider, and research investigator. At the Second International Conference on Cervical Cancer (April 1114, 2002, Houston, TX), nurses presented original research describing these roles in the context of cervical cancer screening, prevention, and detection in the United States and Sweden; outlined the uses of practice guidelines; and suggested future directions for nursing research. In the 20th century, nurses expanded their patient care responsibilities and promoted cancer control by expanding their skills. Some sought to broaden the spectrum of care by investigating cervical cancer screening disparities, behavioral aspects of screening, and differences between the stated purposes of screening programs and those of the nursemidwives operating them. In the 21st century, nurses interested in cervical cancer control expect to broaden the scope of their care and their research roles further by continuing to improve training, advocating screening (and increased education about screening), and helping to establish new sources of funding for research. Cancer 2003;98(9 Suppl):2070 4. 2003 American Cancer Society.

KEYWORDS: cervical cancer, nursing, screening, training, Papanicolaou smear, behavioral control, practice guidelines.

he present is an exciting time for nursing professionals because nurses now are both care providers and active investigators. While maintaining an important role in patient advocacy, nurses have become care providers through nurse practitioner programs. Whether involved in teaching or functioning independently, nurses also have formed groups of nursing investigators who submit proposals for peer review to obtain funding to conduct research.19 At the Second International Conference on Cervical Cancer (April 1114, 2002, Houston, TX), nurses presented original research on cervical cancer screening, prevention, and detection in the United States and abroad; described the use of practice guidelines; and suggested future directions for nursing research.

EXPANDING CANCER CONTROL THROUGH TRAINING

Linda Hilton10 reviewed career experience, emphasized the importance of education for nurse practitioners, and reiterated the need for excellent clinical training. Colposcopy is a particularly difcult subspecialty of gynecology because it requires outstanding visual recognition skills. In addition, a high level of hand-eye coordination is required to perform colposcopy-related tasks. The 3-day colposcopy training program for early nurse practitioners at The University of Texas M. D. Anderson Cancer Center (Houston, TX) provided both pedagogic and clinical instruction. Participants were mentored in colposcopy as they examined their next 100 patients. At the time, this

2003 American Cancer Society DOI 10.1002/cncr.11677

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was the only nurse practitioner colposcopy training program in the United States; currently, there are nearly 200 nurse colposcopy training programs nationwide. Nurse practitioners play a critical role in the colposcopy clinic at The University of Texas M. D. Anderson Cancer Center. They perform colposcopy, colposcopically directed biopsy, and loop electric excision procedures of the vulva and cervix. They are actively involved in all aspects of patient care and frequently teach obstetrics and gynecology interns, residents, and gynecologic oncology fellows.

care, they are in a unique position to inuence the health care behaviors of women in all settings.

CONTRIBUTING TO UNDERSTANDING BEHAVIOR

Nursing professionals also have contributed to the development of behavioral interventions that inuence Pap testing. These interventions require an understanding of the underlying screening intentions and of the psychosocial determinants of screening adherence. The burden of cervical cancer in the United States disproportionately affects low-income women and certain racial and ethnic groups, and there is a need for tailored interventions for these groups. Psychologic predictors of Pap testing intentions and adherence in a sample of low-income African-American and Latina women were studied by one conference presenter, who used the Fishbein Theory of Planned Behavior (TPB) as the guiding framework for the project. The project was divided into two studies. In the rst study,4 a correlational design was used to test the empiric adequacy of the TPB for use in special populations. A convenience sample of 108 African-American and 96 Latina adult women was recruited from urban community-based agencies located in a large mid-Atlantic metropolitan area. A Pap Smear Questionnaire (PSQ) was designed and used to capture attitudes, perceived behavioral control, and intention to obtain an annual Pap test. The Demographic Assessment Survey (DAS) captured screening behavior and demographic information such as age and socioeconomic status for both groups and level of acculturation for Latina women. In the second study, the PSQ provided items for measuring the predictive value of behavioral, normative, and control beliefs on Pap testing adherence, and the DAS was used to measure Pap testing adherence. Direct correlations of attitudes and perceived behavioral control with intention to obtain an annual Pap test were found for African-American and Latina women. The subjective norm was not a signicant predictor of intention. In the second study,3 African-American women who were adherent were found to be more likely to report behavioral beliefs about the characteristics and actions of the physician and less likely to be concerned about the Pap test experience. African-American women were more likely to report normative beliefs regarding the approval of their friends, doctors, and families (and parents and mothers, specically). They also were more likely to report control beliefs regarding the choice of a doctor and access to screening (and free screening in particular). Compared with women who were not adherent, those who were adherent tended to be less concerned about needing

REACHING OUT TO UNDERSERVED WOMEN

Despite the availability of the Papanicolaou (Pap) smear for more than 60 years and the accessibility of the cervix, a signicant percentage of women remain unscreened. The nursing profession can play a pivotal role in increasing the number of women who participate in cervical cancer screening. Barriers to screening include increased age, nonwhite race/ethnicity, low educational level, low income, decreased access, insufcient funding, and unfavorable attitudes toward screening. The goal of the Breast and Cervical Cancer Mortality Prevention Act was to increase the access of medically underserved women to breast and cervical cancer screening.11 In a study that included 3797 patients from the 1992 National Health Interview Survey, an analysis of ethnicity, employment, income, source of care, education, insurance, age, and funding and their impact on the likelihood of a patients having received a Pap smear within the last year was performed. Being insured had a dramatic effect on the results: only 15% of those who were insured had never had a Pap smear, compared with 85% of those who were uninsured. Income also was a statistically signicant variable. (P values less than 0.001 were considered signicant.) Women from families whose annual income was less than $20,000 had a 74% chance of never having had a Pap smear, compared with 26% of women from families whose annual income was greater than $20,000. Education also was a signicant variable: 66% of women with no college education had never had a Pap smear, compared with 33% of women who had attended college. Furthermore, the source of care had an effect on the results: 85% of patients who underwent a Pap smear within the last year had a usual care provider. The source of funding for the Pap smear was not a statistically signicant variable, as approximately 10% of patients in the database who did not have funding had not had a Pap smear and approximately 10% of women with funding had had a Pap smear. Because nurses have extended their advocacy role to become providers and coordinators of

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information or reminders regarding annual screening. Latina women who were adherent were more likely to report behavioral beliefs about the benets of Pap tests and less likely to be concerned about the Pap test experience. They also were more likely to report normative beliefs regarding the approval of their doctors, parents (and mothers, specically), spouses/signicant others, and friends. Latina women who were adherent also were more likely than those who were not adherent to report control beliefs involving the need for family assistance, access to screening, screening reminders, and having a female doctor. These studies have several implications regarding nursing practice. A modied version of the TPB may provide a helpful framework for designing behavioral interventions that target Pap testing adherence in special populations. The ndings from these two studies have been incorporated into a third studya pilot intervention tailored to reach female public housing residents. Preliminary data analysis suggests that the group experiencing the intervention had a modest increase in Pap testing adherence and cervical cancer knowledge.

SWEDISH CERVICAL CANCER SCREENING

One of the advantages of holding an international conference is the opportunity to discover the different roles that care providers play in various countries. Catarina Widmark, from the Karolinska Institutet in Stockholm, reported a revealing qualitative study on the role of the nurse-midwife in population-based cervical cancer screening in urban Sweden.12,13 In Swedish public health care, nurse-midwives traditionally have had a strong, autonomous role. They are the main providers of both antenatal care and contraceptive counseling. They run adolescent clinics and also perform Pap smears as part of the population-based cervical cancer screening program directed at all women, ages 23 60 years. In the mid-1960s, the Swedish authorities compiled guidelines for population-based cervical cancer screening using Pap smears to decrease cervical cancer mortality and morbidity. The initial recommendations suggested that Pap smears were to be taken by nurse-midwives working in antenatal health clinics (ANHCs) run by the county councils and located within the community. The guidelines also clearly stated that nurse-midwives should have time and opportunity to speak with participants and provide them with sufcient information and support.14 The screening program is organized differently in different regions of Sweden. In the Stockholm region, women receive a personal letter inviting them to obtain a free Pap smear at regular intervals at the local

ANHC. Abnormal ndings are followed up by gynecologists at outpatient clinics. Pap smears also are taken (within and outside the screening program) by gynecologists in private practice as well as those in public health practice. Within the larger research project investigating cervical cancer screening from the perspectives of various lay and professional stakeholders, a study was conducted to explore how nurse-midwives working in the screening program viewed issues such as the benets and risks of cervical cancer screening, the reliability of the test itself, risk factors for cervical cancer, and sources of information relevant to cancer screening. Also noteworthy was the way in which nursemidwives described their role in the screening program. Qualitative semistructured interviews were conducted with 21 nurse-midwives (all female) involved in screening programs at 7 ANHCs located in demographically different areas within the Stockholm region. The results of the study indicated discrepancies between the ideals that otherwise guided the nursemidwives in their work at the clinics and the practices of the screening programs. Positive aspects included an ideology in which psychosocial care of the individual woman held primary importance, whereas perceived negative aspects included factors that prohibited the administration of good psychosocial carefor example, lack of time for adequate communication with participants, organizational features such as the lack of feedback, and a lack of familiarity with cancer and cancer prevention. It appears that midwives view themselves more as providers of care for individuals rather than for a population. Elaborating further on the midwives lack of familiarity with cancer and cancer prevention, Widmark reported that beyond their midwifery education the nurse-midwives had received little or no continuing education regarding cervical cancer, including its prevention and treatment. It also was evident that the midwives themselves did not prioritize this area of their work: they neither sought new knowledge nor followed current research. The population-based cervical cancer screening program described here has the goal of preventing ill health in a population through one specic type of intervention and is not focused on the well-being of individuals or high-risk groups. In other aspects of their work at ANHCs, nurse-midwives learn to recognize and attempt to meet the needs of individual women as a means of promoting health for them during their reproductive years. This tension between the concept of achieving health for all and the ideol-

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ogy of individualized care needs to be understood better. Nurse-midwives working in ANHCs have a unique opportunity to reach teenagers (both male and female) as well as adult women with information on how to reduce the risk of contracting sexually transmitted diseases such as the human papillomavirus (HPV). Nurses also can inform these individuals of the advantages of regular screening. Cervical cancer screening can be viewed as a sensitive situation, as it involves both the risk of a potentially life-threatening illness and an intimate physical examination that can test ideas and assumptions regarding the body, sexuality, and norms and values associated with womanhood. It is important for nursemidwives or in other settings, nurse practitionersto realize that their role in cervical cancer screening involves both the provision of care for a population and the provision of sensitive, personal information for the individual participant.

PRACTICE GUIDELINES
Another area of nursing research that deserves attention is the determination of cervical cancer practice guidelines as part of a disease management program. Yvette DeJesus helps create such guidelines at The University of Texas M. D. Anderson Cancer Center. Over the past decade, many health care institutions have developed and implemented clinical practice guidelines and clinical pathways as a means of standardizing patient care and managing costs while preserving quality patient care. Disease management is not a new concept. It is a way to address health care based on a specic disease (cervical cancer, in this case) as it occurs across the continuum of care. This approach allows the implementation of best practices based on evidence, the education of patients, and the measurement of the outcomes of care. Disease management uses tools (e.g., practice guidelines and pathways) and processes. A clinical practice guideline, often presented as a owchart, is a framework for treating a specic disease entity and includes all treatment modalities supported by the medical literature, current practice standards, and expert opinion. A clinical pathway is a detailed, step-bystep description of how to provide a specic treatment option that is part of a practice guide. At M. D. Anderson Cancer Center, institutional clinical practice guidelines have been used to better understand and evaluate the centers own practices, and these guidelines are used to teach quality oncologic care on the main campus as well as at institutions afliated with the center. Guidelines frequently are referred to during multidisciplinary planning con-

ferences. M. D. Anderson Cancer Centers institutional guidelines not only outline options for initial treatment of the primary lesion but also 1) address the indications for and the timing of the neoadjuvant or adjuvant therapies that are selected according to ndings during clinical or pathologic staging, 2) outline the way in which follow-up and surveillance testing should be performed after a given therapy is completed, and 3) describe the situations in which salvage treatment and supportive care measures should be considered. Because M. D. Anderson Cancer Center is a research institution, the centers guidelines also mention the possibility of patients eligibility for institutional or cooperative group protocols whenever appropriate. Many M. D. Anderson Cancer Center faculty members have participated in the development of the National Comprehensive Cancer Network guidelines, and many of these guidelines have been expanded to meet specic institutional practice and protocol research strategies. M. D. Anderson Cancer Centers clinical practice guidelines are developed using selected categories: clinical presentation, evaluation, primary treatment, adjuvant therapy, surveillance, salvage therapy, and supportive care. These guidelines are available from the centers Web site.15 The use of practice guidelines and pathways facilitates health care processes across the continuum of care. Guidelines and pathways establish baseline practices that are used to treat a specic disease, and, over time, specic outcomes can be measured and evaluated to determine whether changes in practices are warranted.

FUTURE DIRECTIONS
One goal of the Second International Conference on Cervical Cancer was to facilitate discussion of future opportunities in all areas of cervical cancer research. The nursing professionals who participated in the conference proposed several ideas for future research in cervical cancer nursing. First, although the education of nurse practitioners has improved greatly over the last 20 years, more standardization of training in womens health is necessary. Ofcial certication, perhaps through the American Society for Colposcopy and Cervical Pathology, for nurse colposcopists would benet both patients and providers by setting a training standard. Women also need better access to screening and more education about HPV and other risk factors for cervical cancer. A study, performed in the hospital by nurses, of the health outcomes of patients with cervical cancer could help to determine new policies and have a direct effect on patient care. Behavioral analyses and cost-effectiveness studies

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tions of an on-site cancer screening clinic. Cancer Nurs. 1991;14:15. Bisanz A, DeJesus Y, Saddler DA. Development, implementation, and ongoing monitoring of pathways for the treatment of gastrointestinal cancer at a comprehensive cancer center. Gastroenterol Nurs. 1999;22:107114. Adams J, DeJesus Y, Trujillo M, Cole F. Assessing sexual dimensions in Hispanic women. Development of an instrument. Cancer Nurs. 1997;20:251259. Morris M, Levenback C, Burke TW, DeJesus Y, Lucas KR, Gershenson DM. An outcomes management program in gynecologic oncology. Obstet Gynecol. 1997;89:485 492. Hilton LW. The Robert Tiffany Lectureship. Vital signs at the millennium: becoming more than we are. Cancer Nurs. 1999;22:6 16. Update: National Breast and Cervical Cancer Early Detection ProgramJuly 1991September 1995. MMWR. 1996;45: 484 487. Widmark C, Tishelman C, Lundgren EL, Forss A, Sachs L, To rnberg S. Opportunities and burdens for nurse-midwives working in primary health care: an example from population-based cervical cancer screening in urban Sweden. J Nurse Midwifery. 1998;43:530 540. Lundgren EL, Tishelman C, Widmark C, Forss A, Sachs L, To rnberg S. Midwives descriptions of their familiarity with cancer: a qualitative study of midwives working with population-based cervical cancer screening in urban Sweden. Cancer Nurs. 2000;23:392 400. Swedish National Board of Health and Welfare. [Principles and routines for gynecological screening. Report from the Swedish National Board of Health and Welfare Expert Group. Introduction.] Stockholm: Swedish National Board of Health and Welfare, 1982. The University of Texas M. D. Anderson Cancer Center. Practice guidelines: guidelines by disease site. Available from URL: http://utm-notes-db2.mdacc.tmc.edu/mdacc/ cm/cwtguide.nsf/LuHTML/SideBar1 [Accessed 31 October 2002].

based on national public health data would be a natural area of research. Nurses could explore issues relevant to nursing outcomes, such as patient intervention design and improvements in access to care. In addition, exploration of the roles of nursing professionals in other countries and how these professionals t into each countrys cervical cancer prevention and screening plan could help to determine health policies. To this end, funding for international databases of cervical cancer information or for cervical cancer registries is crucial. Just as breast cancer control advocates helped create the Susan Komen Foundation, cervical cancer control advocates need to work toward the establishment of a foundation for cervical cancer. With sufcient funding, nursing professionals, because of their patient care expertise, may be in a better position than many other types of researchers to organize such an effort.

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