Journal of Pediatric Psychology, Vol. 26, No. 5, 2001, pp. 277-278
© 2001 Society of Pediatric Psychology
Commentary
Pushing the Envelope: Furthering Research on Improving Adherence to Chronic Pediatric Disease Regimens
University of Kansas Medical Center
All correspondence should be sent to Michael A. Rapoff, Department of Pediatrics, University of Kansas Medical Center, 3901 Rainbow Blvd., Kansas City, Kansas 66160-7330. E-mail: mrapoff{at}kumc.edu .
Nonadherence to medical regimens can adversely affect the health and well-being of pediatric patients, the cost-effectiveness of health care, clinical decision making by physicians, and the results of clinical trials. However, despite nearly three decades of research on the prevalence, correlates, and consequences of medical nonadherence, relatively few studies have investigated strategies for improving adherence. This is particularly true for regimens to treat chronic pediatric diseases.
A recent review of the literature found 27 studies that examined the
efficacy of strategies for improving adherence to chronic disease regimens in
pediatrics (see Rapoff, 1999
,
Table 6.2, pp. 133-140). The majority of these studies (56%) focused on
adherence to regimens for asthma and diabetes and 52% focused on adherence to
medications only. The sample sizes for these studies varied considerably
(range = 1 to 196, median = 10 subjects). In general, these studies supported
the use of behavioral strategies (e.g., token systems) combined with
educational strategies. About one-third of these studies (n = 8)
attempted to assess concomitant changes in disease outcome measures. Only
three of these eight studies showed clear improvements in disease outcomes,
whereas three showed some improvements and two reported no improvements. There
is clearly room to "push the envelope" and develop effective
adherence interventions that improve the health and quality of life (QOL) for
children with chronic diseases. The following are suggestions for furthering
research on adherence enhancement for chronic pediatric diseases.
Use Health Behavior Change Theories and Adherence Correlate Studies to Develop Interventions. Variables derived from theoretical models and correlational studies can be used to develop adherence interventions. For example, the concept of "barriers" to adherence derived from the health belief model has been a robust predictor of adherence and could be incorporated into interventions that address unique barriers identified by patients and families. One barrier might be a hectic social schedule for patients and their families that makes it difficult for them to remember to take medications or fit them into their busy schedules. Interventions might focus on monitoring adherence to prompt medication taking and altering the medication schedule (with the patient's physician) to fit the family's social schedule. Most health behavior change theories have been validated with adults. What better way to validate these theories with children than to empirically test basic tenets of the theories through experimental manipulations of putative causal variables?
Increase the Diversity and Size of Patient Samples. Sample sizes for adherence improvement studies have been small, thus limiting the generalizibililty of results. Studies have also focused on a few chronic diseases and on medication regimens. Studies on children with chronic diseases other than asthma and diabetes are needed, as well as studies focusing on other regimen components, such as exercise and diet. Sample sizes can be increased significantly only by conducting multicenter collaborative studies, such as our medical colleagues do to test the efficacy of new treatments.
There Is a Place for Single-Subject and Conventional Between-Group Designs in Adherence Improvement Studies. Single-subject designs are particularly well suited for studies of chronic diseases that affect small numbers of children. They also allow for repeated measurement of adherence and disease outcomes over time, thus providing a more representative trend in these measures for individual patients. Single-subject designs are also flexible, thus allowing for adjustments in standard intervention protocols to address the unique contextual factors for individual patients and families. Conventional randomized between-group designs are best for establishing the generalizibility of intervention effects across patient groups. They should also include an attention-placebo control group to rule out the effects of simply paying more attention to those assigned to adherence intervention groups (this is the "good science" argument, but another one is that funding agencies often require these).
Assess Adherence, Disease, QOL, and Health Care Utilization/Costs
Outcomes. Intervention studies need to show more than improvements in
adherence to medical regimens. The ultimate goal is to improve the health and
well-being of children, while reducing unnecessary health care utilization and
costs. At this time, the "gold standard" for assessing adherence
to medications would seem to be electronic monitoring combined with periodic
drug assays. With continued development and use, the cost of electronic
monitoring should go down and make it more feasible for clinical use (as
happened for glucometers to monitor blood sugar levels). Also, QOL measures
should be combined with traditional disease outcome measures to assess whether
patients get better, feel better, and do better (in terms of domains of
functioning relevant to them and their families). Most of us need the help of
researchers in public health to use and interpret health care utilization and
cost measures, and it is worthwhile to consult with these colleagues when
designing adherence intervention studies
(Diehr, Yanez, Ash, Hornbrook, & Lin,
1999).
Assess and Protect the Integrity of Adherence Interventions. For most adherence intervention studies (as with psychotherapeutic interventions in general), there is no attempt to monitor and assure that those implementing interventions and those receiving them are adhering to intervention protocols. Treatment manuals need to be developed and periodic observations undertaken to ensure protocol integrity. My colleagues and I have employed research assistants to directly observe intervention sessions, which also allows us to prompt the persons conducting the intervention if they inadvertently omit elements of the protocol. Also, we need to assess whether patients and families are adhering to the protocol (e.g., written records or charts that would indicate the family is employing monitoring or reinforcement strategies).
By pushing the envelope of adherence research, we have the opportunity to test theoretical models of behavior change, advance our measurement technology, and improve the health and well-being of children with chronic diseases. We will also help our medical colleagues to obtain the best possible outcomes for potentially effective medical treatments for chronic pediatric diseases.
Acknowledgments
The author is supported in part by an RO1 grant from the National Institute of Child Health and Development.
Received August 23, 2000; accepted August 25, 2000
References
Diehr, P., Yanez, D., Ash, A., Hornbrook, M., & Lin, D. Y. (1999). Methods are analyzing health care utilization and costs. Annual Review of Public Health, 20, 125-144.[Web of Science][Medline]
Rapoff, M. A. (1999). Adherence to pediatric medical regimens. New York: Kluwer/Plenum.
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