Fact Sheet:
Adherence to Pediatric Medical Regimens for Chronic Disease

Adherence has been defined as “the extent to which a person’s behavior — taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed recommendations from a health care provider.”

Prevalence and Course

Approximately 50 to 55 percent of patients do not consistently adhere to pediatric medical regimens for chronic conditions. Also, adherence drops over time for chronic conditions, even as soon as 6 months postdiagnosis.

Health and Psychosocial Consequences

Inconsistencies in adherence can compromise the efficacy of medical treatments and the health and quality of life of patients with chronic conditions. Adherence failures can have lethal consequences, such as the failure of organ transplants and death from HIV/AIDS.

Evidence-based Assessment

To detect nonadherence and monitor efforts to improve adherence, there are a variety of measures of adherence that can be used. These include patient and parental reports, pill counts, pharmacy refills, observational methods, serum assays and electronic monitors. All of these measures have their relative strengths and weakness and no method is singularly adequate to assess adherence. Evidence-based reviews of measures have concluded that a minimum of two measures should be used for research purposes the continued development and validation of adherence measures that are more accurate and feasible for clinical purposes is in order.

Culture, Diversity, Demographic and Developmental Factors

Factors that predict poor adherence include the complexity of regimens, negative treatment side-effects, poor patient and family adjustment and coping, patient oppositional behaviors, and perceived barriers to adherence. Although members of minority groups have shown lower adherence to some medical regimens compared to other groups, some have argued that this type of comparison is too simplistic. Tucker and her colleagues have offered a “culturally sensitive model,” where one studies factors that relate to adherence within different racial groups and not between them. One consistent developmental finding is that adolescents with chronic disease have poorer adherence than their younger counterparts, particularly when parents completely and prematurely discontinue their support and supervision of their adolescents.   

Evidence-based Interventions

Two comprehensive meta-analyses have been published on the outcomes of adherence interventions for chronic pediatric diseases. Both of these reviews concluded that behavioral and multicomponent interventions are more effective than educational interventions alone. Also, the Graves et al., 2010 review documented positive changes on health outcomes as well as adherence. Effective interventions for improving adherence need to be disseminated into clinical settings. Technology-based programs (e.g., web-based and/or phone apps) may make interventions accessible for people across the United States and even worldwide.

References

Graves, M.M., Roberts, M.C., Rapoff, M.A. & Boyer, A. (2010). The efficacy of adherence interventions for chronically ill children: A meta-analytic review. Journal of Pediatric Psychology, 35, 368-382.

Kahana, S., Drotar, D., & Frazier, T. (2008). Meta-analysis of psychological interventions to promote adherence to treatment in pediatric chronic health conditions. Journal of Pediatric Psychology, 33, 590-611.

Modi, A.C., Rausch, J.R., & Glauser, T.A. (2011). Patterns of nonadherence to antiepileptic drug therapy in children with newly diagnosed epilepsy, Journal of the American Medical Association, 305, 1669-1676.

Rapoff, M.A. (2010). Adherence to pediatric medical regimens (2nd ed.). New York: Springer

Tucker, C.M., Petersen, S., Herman, K.C., Fennell, R.S., Bowling, B., Pedersen, T., & Vosmik, J.R. (2001). Self-regulation predictors of medication adherence among ethnically different pediatric patients with renal transplants. Journal of Pediatric Psychology, 26, 455-464.

World Health Organization (2003). Adherence to long-term therapies: Evidence for action. Geneva, Switzerland.