Journal of Pediatric Psychology, Vol. 25, No. 1, 2000, pp. 53-55
© 2000 Society of Pediatric Psychology
Commentary |
Commentary: Rethinking Our Interventions in Pediatric Chronic Pain and Treatment Research
University of Iowa
All correspondence should be sent to Daniel L. Clay, Deptartment of Psychological & Quantitative Foundations, University of Iowa, N 336 Lindquist Center, Iowa City, Iowa 52242. E-mail: daniel-clay{at}uiowa.edu .
A recent review of empirically supported treatments in pediatric
disease-related pain (Walco, Sterling,
Conte, & Engel, 1999
) has aptly revealed the inadequacy of our
treatment approaches to chronic pain. I found it striking that so little
empirical evidence exists for the efficacy of pain treatments in children.
This paucity has been attributed to the rigors associated with scientific
treatment research and the unique challenges associated with chronic pain
(Lavigne, 1999;
McGrath, 1999;
Riekert & Drotar, 1999). I
generally agree, but I propose that the main problem lies in the nature of our
interventions, independent of the rigors of science.
Why So Few Studies?
The few studies reviewed by Walco et al.
(1999) for disease-related
pain, particularly rheumatologic pain, have had high refusal and dropout rates
or participants who were dropped for noncompliance. For example, in Lavigne,
Ross, Berry, Hayford, and Pachman
(1992), 78 patients ages 7 to
16 were approached to participate in the study. Of those, 22 either refused or
failed to return pain diaries, 35 failed to meet pain criteria, and a final
sample of 8 patients participated in the intervention, only 11% of the
patients who were approached to participate. Similarly, in the Walco, Varni,
and Ilowite study (1992), 58
patients were approached to participate, 26 agreed to participation, and half
of those dropped out to leave a final sample of 13 patients, which is 22% of
the original subject pool. These recruitment and attrition difficulties have
undoubtedly contributed to the lack of published treatment studies in this
area. At this rate, meeting Chambless criteria for empirically validated
treatments will be nearly impossible.
Why is it so difficult to maintain children and their families in pediatric studies? One explanation is that the rigors associated with clinical trials or treatment intervention research place unreasonable or unacceptable demands on the children and their families. These demands may include need for numerous clinic visits (often requiring long travel distances), repeated medical procedures (physical exams, blood tests), completion of written questionnaires, daily recording of activities, and more inconveniences. An alternative explanation is that the treatment itself, not the study of its effectiveness, creates the unacceptable demands resulting in nonadherence, refusal, dropout, and consequently a lack of data on effectiveness.
Rethinking Treatments
The problem of treatment adherence has been a critical issue since treatments have been implemented and likely will remain so. We have spent too much time and energy focusing on how to get people to change their lives to fit our treatments, with far too little attention to how we can change our treatments to fit peoples' lives. For example, our complex treatments often do not take into account the everyday demands of children and their parents. We often assume that our treatments will take precedence over soccer games, work schedules, church, Girl Scouts, summer camps, daycare, and so on. Our eagerness to help has blinded us to the relative importance of our interventions in the complex lives of our patients. What kind of external validity exists for a treatment that may work, but for only 10% of the population for which it is intended?
We need to find more creative, theory-based interventions that are more
acceptable and adaptable to children and their families within the complex
context of their lives. I believe this is where the future of effective
intervention lies. For example, technology has allowed us to maintain
communication with patients in ways that until now were impossible, such as
telehealth and the internet. We are currently using Varni and coleagues'
theory-driven Biobehavioral Model of Pediatric Pain
(Varni et al., 1996) and
incorporating technologies that allow children and their families more
convenient and immediate access to treatment materials. The challenge for
pediatric psychology is finding ways to use technology to develop treatments
acceptable enough to attract patients and then to demonstrate the
effectiveness of such interventions through sound empirical inquiry. Instead
of insisting on adherence, we should focus on "treatment
accommodation." This refers to the extent to which a standardized
treatment approach can accommodate the complex and unique demands of patients'
lives. Consequently, nonadherence should be a reflection more of the treatment
than of the patient. Likewise, high refusal and attrition should be perceived
as a problem with the treatment, not a problem with participants.
Rethinking Treatment Research
Once we find interventions acceptable to patients and families (i.e., high treatment accommodation), establishing empirical evidence for their efficacy will require higher "research acceptability." Research acceptability is similar to treatment acceptability; it refers to the extent to which a given research protocol is acceptable to potential participants. For example, in order to increase research acceptability of interventions, a patient should experience normal delivery of treatment (without the study). This would minimize additional demands on patients and their families, thereby reducing refusal and attrition in treatment trials. For example, instead of diaries and other self-reports for actual use of interventions, technology such as electronic monitoring may minimize the added demands of participating in treatment research. Additionally, qualitative studies with individual patients may help us to better understand the demands leading to refusal and attrition. For example, systematic examination of reasons why people decline participation or drop out may help identify recurring issues or reasons that can then be directly addressed in our treatments and research designs. Our clinical experience suggests that asking people to do more tasks during their already busy days is just too much given the patients' family and work demands. This examination is necessary if we are to overcome the obstacles to amassing a body of empirical evidence supporting our interventions for chronic and disease-related pain.
Summary
The dearth of empirical support for interventions in pediatric chronic and disease-related pain requires a shift in our treatments and treatment research. Treatments with a higher degree of treatment accommodation are needed to reduce the treatment demands on patients and their families. We need to focus more on changing our treatments to fit the lives of our patinets instead of trying to change our patients' lives to fit our treatments. Likewise, treatment research will need higher levels of research acceptability to ensure adequate data demonstrating the true efficacy of treatments. A more creative approach is needed that incorporates technology as a tool to these ends.
Acknowledgments
I thank Dennis C. Harper for his helpful comments on earlier drafts of this article.
Received August 3, 1999; accepted September 9, 1999
References
Lavigne, J. V. (1999). Commentary: Response to Walco et al. review on disease-related pain. Journal of Pediatric Psychology, 24, 168-170.
Lavigne, J. V., Ross, C. K., Berry, S. L., Hayford, J. R., & Pachman, L. M. (1992). Evaluation of a psychological treatment package for treating pain in juvenile rheumatoid arthritis. Arthritis Care & Research, 5, 101-110.
McGrath, P. A. (1999). Commentary: Psychological
interventions for controlling children's pain: Challenges for evidenced-based
medicine. Journal of Pediatric Psychology,
24, 172-174.
Riekert, K. A. & Drotar, D. (1999). Who
participates in research on adherence to treatment in insulin-dependent
diabetes mellitus? Implications and recommendations for research.
Journal of Pediatric Psychology,
24, 253-258.
Varni, J. W., Rapoff, M. A., Waldron, S. A., Gragg, R. A., Bernstein, B. H., & Lindsley, C. B. (1996). Effects of perceived stress in pediatric pain. Journal of Behavioral Medicine, 19, 515-528.[Web of Science][Medline]
Walco, G. A., Sterling, C. M., Conte, P. M., & Engel, R. G.
(1999). Empirically supported treatments in pediatric psychology:
Disease-related pain. Journal of Pediatric Psychology,
24, 155-167.
Walco, G. A., Varni, J. W., & Ilowite, N.J.
(1992). Cognitive-behavioral pain management in children with
juvenile rheumatoid arthritis. Pediatrics,
89,
1075-1079.
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