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Key words adherence; chronic health conditions; meta-analysis; pediatric; psychological intervention.
Large numbers of children and adolescents in the United symptoms, complications, and health care utilization and
States have chronic health conditions that threaten their limitations in quality of life (Drotar). Nonadherence also
physical health and quality of life (Newacheck, McManus, complicates research concerning the development and
Fox, Hung, & Halfon, 2000). Modern advances in pediatric evaluation of medical treatments. For example, children’s
care have created a range of available medical treatments nonadherence to pharmacological treatment research pro-
that can reduce illness-related symptoms and longer term tocols may result in erroneous conclusions that medications
complications, decrease healthcare utilization, and enhance are not effective when in fact they are not taken in the proper
quality of life. Children with chronic health conditions and doses (Johnson, 2000).
their families are responsible for managing multidimen- Recognition of the critical importance of promoting
sional treatment regimens that can include medications, adherence to medical treatment among children and
dietary requirements, and physical therapy. However, adolescents and their families has led to the development
children and adolescents with chronic illness have great and evaluation of psychological interventions to enhance
difficulty completing prescribed treatment regimens, which adherence to medical treatment (Drotar, 2000; Lemanek
can be complex and burdensome (Rapoff, 1999). High rates et al., 2001; Rapoff, 1999).1 Various reviews of empirically
of nonadherence to treatment (averaging 50% or more) have supported interventions have indicated that interventions
been reported for various pediatric chronic conditions, such
as asthma, juvenile rheumatoid arthritis (JRA), and diabetes
1
(Drotar, 2000; Lemanek, Kamps, & Chung, 2001; Rapoff). The concept of self-management is one which overlaps with
adherence and adherence-related behaviors. Self-management
Such rates of nonadherence indicate that many pediatric
usually refers to the methods by which a child and his/her parent
chronic health conditions are undertreated relative to engages, manages, and/or controls a wide range of treatment
recommended standards of medical care. Nonadherence regimen behaviors, while adherence refers to the extent to which the
to treatment may account for increased morbidity prescribed treatment has been completed.
All correspondence concerning this article should be addressed to Shoshana Kahana, Visiting Scientist, Contractor,
National Institute of Mental Health, Division of Developmental Translational Research, 6001 Executive Blvd,
MSC 9617, Room 6190, Bethesda, MD 20892, USA. E-mail: sykahana@gmail.com
Journal of Pediatric Psychology 33(6) pp. 590–611, 2008
doi:10.1093/jpepsy/jsm128
Advance Access publication January 11, 2008
Journal of Pediatric Psychology vol. 33 no. 6 ß The Author 2008. Published by Oxford University Press on behalf of the Society of Pediatric Psychology.
All rights reserved. For permissions, please e-mail: journals.permissions@oxfordjournals.org
Adherence Interventions for Pediatric Conditions 591
have shown mixed success in improving adherence to PsycINFO and PUBMED/MEDLINE, were conducted in
treatment (Drotar, 2006; Lemanek). Some behavioral order to identify articles in peer-reviewed publications
intervention models (Rapoff et al., 2002) appear promising, that reported on psychological interventions (e.g., behav-
while the Behavioral Family Systems model (Wysocki et al., ioral, educational, combined, and peer-based) for various
2006) and individualized written (self) management plans chronic pediatric conditions in which adherence was
(Toelle & Ram, 2002) have produced mixed results in measured either as a primary or secondary outcome.
improving treatment adherence. Search terms such as intervention, treatment, adherence,
The results of adherence-promoting intervention stud- compliance, asthma, diabetes, cystic fibrosis (CF), cancer,
ies targeting pediatric conditions that have been conducted hematology, oncology, sickle cell disease, obesity, overweight,
to date, however, are difficult to summarize because they transplants, gastrointestinal disorders [including Crohn’s
one effect size. However, 13 studies were included that associated with effect sizes were calculated as well.
reported multiple effect sizes. These effect sizes could not Confidence intervals not including zero were statistically
be aggregated because of the methodological or conceptual significant effects, while those including zeroes were not.
differences between the multiple dependent variables Q statistics were examined to test for homogeneity
reported in each of these studies. The studies included: among the effect sizes associated with any given predictor.
four studies that contained two experimental versus control Significant Q statistics indicated that the variability among
groups or separate and multiple experimental group effect sizes was greater than subject-level sampling error
comparisons (i.e., comparing separate experimental vs. alone and likely due to systematic differences among the
control groups over the course of 4 years); three studies that studies (Lipsey & Wilson, 2001). The random effects
provided sufficient information to compute effect sizes for model was used to calculate all mean effect sizes because
Percent Whose
Total female/ behaviors
Type of sample percent Who implemen- Involved in Number of Rater of were
Baum & Creer, Asthma Multi-component RCT; Exp. vs. control 16 25/75 PhD Child, Parent 2 h session; Child Child
1986 Psychologist weekly meet-
ing with
experimenter
Bonner et al., Asthma Educational RCT; Exp. vs. control 100 50/50 71–75% H; Family Child, Parent 3 month (3 ses- Caregiver Family
2002 22–23% AA coordinator sions using 3
intervention
components)
Brazil, McLean, Asthma Psychosocial Exp. vs. control 35; 49; 30/70 Physiotherapist, Child, Parent 3 month inpati- Father, Child
Abbey, & 44 nurse educa- ent (3 times a Mother,
Musselman, tor, social week with Child
1997 worker, child; 1
physician monthly
parent
meeting)
Burkhart, Dunbar- Asthma Multi-component RCT; Exp. vs. control 42 26/74 98% W Nurse Child, Parent 5 weeks (3 1-h Electronic Child
Jacob, Fireman, sessions) monitoring,
& Rohay, 2002 Child
Butz et al., 2006 Asthma Educational RCT; Exp. vs. control 181; 34/66 89% AA; 11% Community Parent 6 months (6 Pharmacy Child;
192 other health nurses 1-hour records, Parent
sessions) Parent
Carson, Council, Asthma Educational Pre–Post 33 100% W Physicians, Child, Parent 6 weeks Parent Child,
& Schauer, nurses, Parent
1991 respiratory
therapist,
pharmacist
Clark et al., 2004 Asthma Educational RCT; Exp. vs. control 674 98% AA Child, Parent 6 treatment Parent Parent
components
Dahl, Gustafsson, Asthma Behavioral RCT; Exp. vs. control 19 42/58 Child, Parent 4 weeks (4 1-h Child, Parent Child
& Melin, 1990 sessions)
Guendelman, Asthma Technology-based RCT; Exp. vs. control 128; 43/57 74–79% AA; Physician, case Child 6–12 weeks Parent Child
Meade, 122 8–12% W worker, nurse (daily)
Benson, Chen,
& Samuels,
2002
Gustafsson, Asthma Psychosocial Exp. vs. control 11 Therapists Child, Parent 8 months (2–21 Allergist Child
Kjellman, & sessions)
Cederblad,
1986
595
596
Table I. Continued
597
598
Kahana, Drotar, and Frazier
Table I. Continued
Percent Whose
Total female/ behaviors
Type of sample percent Who implemen- Involved in Number of Rater of were
Stark et al., 1993 CF Multi-component Pre–Post 3 67/33 Clinical psychol- Child, Parent 8 weeks (7 Parent Child
ogist, dieti- sessions)
cian, post-
doctoral
fellow, RA
Stark et al., 1996 CF Multi-component Pre–Post and Exp. vs. 7 Clinical psychol- Child, Parent 6–8 weeks (7 Parent Child
control ogist, dieti- sessions)
cian; post-
doctoral
fellow, RA
Stark, Mackner, CF Multi-component Pre–Post 44; 15 50/50 100% W Clinical psychol- Child, Parent 8–9 weeks (6–7 Parent Child
Kessler, ogist, post- sessions, 1–
Opipari, & doctoral 1.5-h each)
Quittner, 2002 fellow
Stark et al., 2003 CF Multi-component RCT; Exp. vs. control 7 Dietician, post- Child, Parent 9 weeks (seven Parent Child
doctoral 1.5-h
fellow, RA sessions)
Anderson, Wolf, Diabetes Multi-component RCT; Exp. vs. control 60 53/47 Diabetes nurse/ Child, Parent 18 months (4–6 Adolescent Adolescent
Burkhart, educator sessions, 3 h
Cornell, & each)
Bacon, 1989
Anderson, Diabetes Psychosocial Pre–Post and Exp. vs. 85 50/50 RA Child, Parent 12 months (3–4 Child, Parent Family
Brackett, Ho, control visits per
& Laffel, 1999 year)
Bloomfield et al., Diabetes Educational Crossover; Exp. vs. 48 56/44 Pediatrician, Child, Parent 5 visits per year Child, Parent Child
1990 control dietician,
chiropodist,
nurse
Boardway, Diabetes Behavioral RCT; Exp. vs. control 17 58/42 68.42% W; Nurse Child 6 months Child Child
Delamater, 21% AA (10 þ 3
Tomakowsky, sessions)
& Gutai, 1993
Brown et al., Diabetes Technology-based RCT; Exp. vs. control 59 Child 6 months (34 h Parent Child
1997 overall)
Elamin, Eltayeb, Diabetes Educational Pre–Post 34 50/50 Dietician Child, Parent 3 months (4 Child, Parent Child
Hasan, weekly ses-
Hofvander, & sions; ses-
Tuvemo, 1993 sions
599
600
Kahana, Drotar, and Frazier
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Table I. Continued
Percent Whose
Total female/ behaviors
Type of sample percent Who implemen- Involved in Number of Rater of were
Author Disease intervention Effect size comparison used male Ethnicity total ted intervention intervention sessions adherence adherent
Wysocki et al., Diabetes Multi-component RCT; Exp. vs. control 76; 74 58/42 78–80% W; Licensed Child, Parent 3 months (10 Child
2000 (one exp. and 2 17–22% AA psychologists sessions)
controls)
Magrab & Hemodialysis Behavioral Pre–Post; ABA 4 50/50 Dietician, psy- Child 4 weeks (12–18 Unit staff Child
Papadopoulou, chologist, dialysis
1977 unit staff sessions)
Greenan-Fowler, Hemophilia Behavioral Pre–Post 8 Two physical Child, Parent Weekly (12 Child Child
Powell, & therapists, sessions)
Varni, 1987 college
student
Ellis, Naar-King, HIV Multi-component Pre–Post 18 38/62 11% W; 84% Mental health Child, Parent 6.9 months (46 Parent Child
Cunningham, AA; 5% specialists, sessions)
& Secord, Other master’s level
2006 social work-
ers or
psychologists
Stark et al., 2005a IBD Multi-component RCT; Exp. vs. control 32 47/53 81–88% W Ph.D. psycholo- Child, Parent 8 weeks (6 1-h Parent Child
gist, postdoc- sessions)
toral fellow, 2
RAs
Rapoff et al., 2002 JRA Multi-component RCT; Exp. vs. control 34 68/32 94% W Nurse Child, Parent 12 months (1 Electronic Child
30-min ses- device
sion; phone
call biweekly
for 2 months;
monthly for
10 months)
Stark et al., 2005b JRA Multi-component RCT; Pre–Post and 49 68/32 92–96% W Ph.D. psycholo- Child, Parent 8 weeks Parent Child
Exp. vs. control gist, postdoc- (6 1–1.5 h
toral fellow, sessions)
RA
Ebbeling, Leidig, Obesity Multi-component RCT; Exp. vs. control 14 69/31 81.25% W; Child 6 months (12 Child Child
Sinclair, 18.75% sessions); 6-
Hangen, & non-W month
Ludwig, 2003 follow-up
601
602 Kahana, Drotar, and Frazier
Table II. Categorization of Treatments from Included Studies included both group and individual components.
Educational interventions With respect to participants in the interventions, data
Educational/instructional could be ascertained for n ¼ 67 studies (Table I); of these,
Family educational
n ¼ 43 (64.2%) included both parents and children;
Audiovisual instruction
n ¼ 16 (23.9%) included only children; n ¼ 5 (7.5%)
Self-management education
included only the parents; and n ¼ 3 (4.5%) studies
Dietary/dietary education/nutrition education
School (educators) education
included the child, parents, and either multiple family
General practitioner assessment and feedback members or broader community agents (e.g., school).
Behavioral interventions
Behavioral Characteristics of Interventionists
(M ¼ 6.94, SD ¼ 3.72) subsequent to the initial posttreat- (mean d ¼.54, 95% CI ¼ 0.34–0.73, n ¼ 10) and
ment assessment. multi-component interventions (mean d ¼.51, 95%
CI ¼ 0.45–0.57, n ¼ 46), small to medium range for the
Adherence Outcomes psychosocial interventions (mean d ¼ .44, 95% CI ¼ 0.23–
The weighted-mean effect across all of the adherence 0.65, n ¼ 4), and small for the educational/instructional
outcomes was in the small range [mean d ¼.34, 95% interventions (mean d ¼ .16, 95% CI ¼ 0.10–0.22, n ¼ 23).
confidence interval (CI) ¼ 0.30–0.38, n ¼ 90]. However, The effect size for technology-based interventions was not
there was a significant amount of heterogeneity across all significantly different than zero (mean d ¼ .08, 95%
adherence outcomes variables (Q ¼ 381.78, p <.0001; see CI ¼ 0.09–0.25, n ¼ 7).
Table III). Due to this significant heterogeneity, the
authors investigated several hypothesized potential mod- Type of Adherence Outcome
erators of the effect size, including type of intervention, With respect to adherence outcomes by domain, self-
type of treatment outcome, type of disorder, and study management and self-care behaviors (mean d ¼ .52, 95%
design. Weighted-mean effect sizes and Q statistics of CI ¼ 0.44–0.60, n ¼ 19), dietary change (mean d ¼ .47,
heterogeneity are presented for potential moderators of 95% CI ¼ 0.36–0.58, n ¼ 19), and exercise-environmental
adherence behaviors in Table III. changes (mean d ¼ .47, 95% CI ¼ 0.31–0.63, n ¼ 6)
produced effect sizes within the medium magnitude
Type of Intervention range. Medication adherence and the percentage of
Effect sizes for interventions were variable and ranged participants changing adherence behaviors resulted in
from the medium magnitude for the behavioral small effect sizes (around a mean d ¼ .2). The mean effect
604 Kahana, Drotar, and Frazier
size for overall adherence with treatment regimen (mean higher mean adherence differences than experimental
d ¼ .18, 95% CI ¼ 0.02–0.38, n ¼ 2) was not significantly versus control designs ( p <.05). Second, behavioral
different than zero. interventions exhibited significantly higher mean
adherence effects than educational/instructional interven-
Type of Disorder tions ( p <.05).
With respect to disorder type, CF exhibited a medium to Third, experimental versus control group designs
large effect size (mean d ¼ .74, 95% CI ¼ 0.60–0.88, significantly interacted with intervention type
n ¼ 13), while miscellaneous disorders displayed a [(F(4,49) ¼ 3.15, p <.05]. Specifically, with these types
medium effect (mean d ¼ .54, 95% CI ¼ 0.41–0.67, of designs, both behavioral and multi-component inter-
n ¼ 16) with adherence outcomes. Diabetes exhibited an ventions produced higher mean adherence effects than
treatments for regimen adherence (Lemanek et al., 2001), comparisons, as they ranged from active treatment
which have supported the relative effectiveness and groups to those receiving no intervention. Adherence
potency of various behavioral and multi-component effects emerging from studies utilizing an active control or
interventions, at least in the short term. Although comparison group are particularly noteworthy, as their
psychosocial interventions also exhibited effects in the standard of comparison is more rigorous than uncon-
small to medium range, it is difficult to make conclusive trolled, within-group pre–post designs that exhibited
decisions due to the small number of studies (n ¼ 4) larger magnitudes of effects across several domains.
upon which they were based. Educational interventions Apart from the findings of the meta-analysis, one
appeared to produce negligible shifts in adherence conspicuous methodological issue noted in the under-
behaviors. In light of the available evidence, the clinical taking of this review was the lack of consistency and
First, future research should focus on conducting meta-analysis evaluation, studies that utilize within-group
dismantling studies of behavioral and multi-component comparisons should report the paired t-test value,
interventions, in order to hone in on the active and standard error of the differences between means, and/or
effective components as well as the underlying mechan- correlation between pre- and post-intervention of a
isms of the implemented interventions. The inclusion of particular adherence measure.
psychosocial interventions in a greater number of future Sixth, in order to increase the generalizability of
studies would help to further evaluate their potential adherence-promoting interventions, illness groups need to
efficacy in promoting adherence. Second, future work be better described. Much of the extant work has
needs to more systematically conduct longitudinal follow- included studies which often combine youth with varied
up studies for longer periods of time, in order to both presentations of illness, ranging from severe to mild
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