Journal of Pediatric Psychology, Vol. 26, No. 5, 2001, pp. 279-282
© 2001 Society of Pediatric Psychology
Commentary
If "An Apple a Day Keeps the Doctor Away," Why Is Adherence So Darn Hard?
University of Miami
All correspondence should be sent to Annette La Greca, Department of Psychology, 5665 Ponce de Leon Blvd., 2nd Floor, Coral Gables, Florida 33146. E-mail: alagreca{at}miami.edu .
As pediatric psychologists know well, adhering to complicated medical
regimens for chronic pediatric conditions—such as diabetes, asthma, and
arthritis—is a challenge for children, adolescents, and their families
(La Greca & Schuman, 1995; Rapoff,
1999
). And it is no wonder. Children and families need to fit a
complex disease and its management into everyday life, which often has
competing demands. In fact, most children and families are "on their
own" in terms of handling the day-to-day management of their disease,
with only occasional guidance from health care professionals.
Accordingly, efforts to improve treatment management have been an important goal for promoting the health and well-being of youths with chronic disease. However, as the review by Lemanek, Kamps, and Chung (this issue) demonstrates, much work still needs to be done in this area. Lemanek et al. found no empirically supported interventions for the management of asthma, diabetes, or juvenile rheumatoid arthritis, conditions that together include a majority of the youths with chronic disease. Across these three conditions, the only "probably" efficacious treatments incorporate multiple components: typically behavioral strategies or self-management strategies in conjunction with education and/or organizational strategies.
Why is the treatment outcome research so sparse for conditions that affect so many youngsters' health and quality of life? In part, the challenges of managing chronic diseases also extend to investigators trying to develop and evaluate programs for improving treatment adherence. It is extremely difficult to engage "nonadherent" children and families in treatment studies when they are already having a hard time balancing life demands with disease requirements. In fact, the children and families who are the least adherent are often the most difficult to engage. How can this situation be improved? Below are some suggestions for rethinking our conceptualization of adherence and for future directions in research.
Conceptualization and Measurement Issues
As Lemanek et al. note, the term adherence implies a match between
a person's behavior and the medical advice or recommendations he or she has
been given. Yet, by and large, researchers have not examined this
"match." Instead, most have focused on the treatment-related (or
self-care) behaviors that the person demonstrates (e.g., taking medication,
regulating meals, exercising, etc.) (see La Greca & Schuman, 1995), with a
few efforts to compare the behaviors with "ideal" treatment
recommendations (e.g., Johnson,
Silverstein, Rosenbloom, Carter, & Cunningham, 1986). Thus,
perhaps it is time to give "adherence" a rest and instead focus on
the "treatment-related behaviors" we try to promote in children
and families. One benefit of shifting our thinking and conceptualization is
that it might also reduce the negative and paternalistic connotations
associated with "adherence."
Another benefit of shifting our conceptualization of adherence is that it
might facilitate greater standardization in our measurement approach. As
Lemanek et al. point out, there is substantial variation in how adherence has
been measured across treatment studies, even for the same pediatric condition.
This makes cross-study comparisons difficult, if not impossible, and limits
the advancement of the field. We need to do more to standardize the assessment
of adherence—or preferably "treatment-related
behaviors"—within and across pediatric conditions and to specify
the areas of behavior of interest (e.g., medication taking, crisis
management, meal regulation, exercise, etc.). Adherence has long been
recognized as multidimensional (e.g.,
Glasgow & Anderson, 1995;
Johnson et al., 1986; La Greca
& Schuman, 1995). Yet there still is a tendency for investigators to
obtain an overall summary score of adherence (e.g.,
Gavin, Wamboldt, Sorokin, Levy, &
Wamboldt, 1999; Ott, Greening,
Palardy, Holderby, & Debell, 2000). Shifting our focus to ways
of measuring specific treatment-related behaviors would greatly facilitate
comparisons across studies and could help to develop better interventions as
well.
Aside from how adherence is conceptualized, the Lemanek et al. review
highlights the shortage of studies that include measures of both adherence and
health outcome. This is troublesome, as we do not know if efforts to
improve treatment-related behaviors are also having a positive impact on
children's health. For youths with diabetes, Johnson and colleagues
(1990) found only a modest
relationship between adherence and heath status. In other words, many youths
with good levels of adherence have poor disease control, as well as the
reverse. If we expect children and families to maintain high levels of complex
treatment-related behaviors for long periods of time, it is important to know
how these behaviors are affecting their health status as well.
Future Directions
The Lemanek et al. review suggests several "take home" messages for those interested in promoting children's and families' treatment management. Below are several recommendations for future research in this area.
Examine the Match Between the Treatment-Related Behavior and the Intervention Strategy. Rather than examining adherence in a generic manner, future studies might examine the types of intervention strategies appropriate for different treatment-related behaviors. Because of the complexity of chronic disease regimens, there is a tendency to develop interventions that cover all facets of adherence rather than ones that focus on specific behaviors (e.g., medication taking, meal management, exercise, etc.). A child who has difficulty managing meals may not need the same type of intervention as one who takes medications inconsistently or who is reluctant to exercise.
Ample research suggests that lifestyle aspects of treatments are the most
difficult to manage (e.g., Johnson et al.,
1986; La Greca, Follansbee,
& Skyler, 1990; also see La Greca & Schuman, 1995). In all
likelihood, the multicomponent treatments seemed to fare best in Lemanek et
al.'s review because they "cover all the bases." However, in our
current managed-care environment, complex, multicomponent interventions may
not be practical or reimbursable for youths with chronic conditions. However,
if certain strategies were found to be useful for medication taking (e.g.,
reminders, rewards), or for increasing exercise (e.g., joining a sports team),
then children who need help with these specific behaviors might not need a
complex, multicomponent, multiple-session intervention. Obtaining a better
match between what children and families need and the types of
treatments they receive should be a high priority for the future.
Develop and Evaluate Interventions for Minority Youths and
Multicultural Populations. Minority youths, especially those of Hispanic
or Latino backgrounds, are the fastest growing segment of the U.S. population
(Woodward, Dwinell, & Arons,
1992). In the very near future (if not already), the majority of
youths with chronic disease will come from minority backgrounds. Moreover,
recent statistics suggest that some ethnic groups may be more vulnerable to
chronic conditions than others, as witnessed by the rising rates of asthma
among some Latino groups (Ledogar, Penchaszadeh, Garden, & Iglesias
Garden, 2000). The changing demographics of pediatric chronic disease need to
be reflected in pediatric treatment research. Are existing interventions for
treatment-related behaviors useful and appropriate for minority youths or
those from multicultural backgrounds? What efforts or accommodations are
needed to engage minority youths and families in adherence interventions?
Developing culturally sensitive interventions should be a high priority for
pediatric psychologists.
Examine Interventions Over Time. With a chronic disease, it is unreasonable to expect that a "one time" intervention will suffice. Yet most intervention studies have limited or insufficient follow-up periods (Lemanek et al., this issue). Thus, we don't know how treated children and families fared down the road, or with changes in development. Periodic reevaluation and planned "boosters" or minitreatments should be a regular part of the picture for chronic conditions.
Use State-of-the-Art Methodology. Although improving
treatment-related behaviors in youths with chronic disease is a challenge,
some investigators handicap themselves unnecessarily by using less than
optimal methods. In our sophisticated research era, is there any reason to
conduct treatment studies without clearly specifying the conceptual
basis for the intervention, manualizing and carefully documenting the
specifics of treatment, checking treatment integrity, and conducting a
follow-up? Investigators should consider methodological limitations of
existing studies (see Glasgow &
Anderson, 1995) and move toward a more comprehensive and updated
approach to conducting treatment out-come studies.
Consider New Medical and Epidemiological Information. New trends
in medicine may lead to exciting new avenues for investigation. This point can
be illustrated by recent work on diabetes in youths. Recent studies have
revealed that not all children and adolescents with diabetes have the type 1
or "insulin-dependent" type. Rather, some youths (especially
African Americans, Latinos, and Native Americans) may have type 2 diabetes,
which is typically related to problems with insulin resistance rather than
insulin production (Ponder, Sullivan,
& McBath, 2000). This opens up new areas for pediatric
investigation and intervention, as type 2 diabetes may be treated by certain
behavioral and lifestyle changes (e.g., exercise, food regulation). Thus,
keeping up with trends in medicine will suggest fruitful areas for
psychosocial research.
Consider Youngsters' Quality of Life. For youngsters with chronic
disease and their families, the bottom line is trying to strike the right
balance between treatment management and quality of life. Parents who make
treatment decisions for their children often make these decisions with great
uncertainty about the effectiveness of the treatment regimen and with
substantial concern about potential adverse reactions
(Deaton, 1985). What may appear
to be "nonadherence" to a health care professional may actually be
the family's way of adapting the regimen to accommodate the child's quality of
life. In order to make important strides in our understanding of how to
promote better selfcare among children and adolescents with chronic disease,
we need to factor quality of life into the equation. Future interventions need
to include measures of quality of life, so that the impact of our
interventions can be better understood and be sensitive to the psychosocial
and developmental issues of paramount concern to children, adolescents, and
families.
Conclusions
Considering all the challenges, it is no wonder that "nonadherence" is a problem for youths with chronic pediatric conditions. In this context, however, perhaps we should be celebrating the many successes that children and families have instead of focusing primarily on their setbacks. The time has come for pediatric psychologists to build on the strengths and resources of children and families. This shift may also go a long way toward engaging youths and families in interventions to promote better treatment management and disease control.
Received September 6, 2000; accepted September 9, 2000
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