Fact Sheet : Adherence to Pediatric Medical Regimens for Chronic Disease

Definition, Prevalence and Course

The World Health Organization defines adherence 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.” Among youth with chronic conditions, approximately 50% of children and 65-90% of adolescents do not consistently adhere to their medical regimens. Over time, and as soon as 6 months post-diagnosis, adherence drops among youth with chronic conditions.

Health and Psychosocial Consequences

Inconsistencies in adherence negatively impact health and can lead to poor medical treatment efficacy, unnecessary drug escalation, drug resistance, and poorer clinical outcomes, including increased morbidity and mortality. Adherence failures, for example, can have lethal consequences, including organ failure following transplants and death from HIV/AIDS. The psychosocial consequences of inconsistent adherence in patients with chronic conditions are also notable and include poorer levels of health-related quality of life.

Evidence-based Assessment

Evidence-based assessment is critical to detect, monitor and improve adherence. A variety of methods exist to measure adherence including patient and parental reports, electronic monitors, pill counts, pharmacy refills, observational methods, and biological assays. All of these measures have 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.

Factors Associated with Adherence

Factors that predict poor adherence can be modifiable or non-modifiable and have been conceptualized within the Pediatric Self-Management model as falling within different domains, including the individual (e.g., age, oppositional behaviors), family (e.g., poor family adjustment or supervision), community (e.g., peer support), and healthcare systems (e.g., patient-provider communication). Cultural and diversity related factors (e.g., racial/ethnic identity, English proficiency, and socioeconomic status) have also been related to adherence.  Members of minority groups, for example, have lower adherence to some medical regimens compared to other groups. However, some have argued that this type of comparison between groups is too simplistic, and Tucker and colleagues have offered a “culturally sensitive model,” where factors that relate to adherence are studied within different racial groups and not between them.

Evidence-based Interventions

Three comprehensive meta-analyses have been published on the outcomes of adherence interventions for chronic pediatric diseases. All of these reviews concluded that behavioral and multicomponent interventions are more effective than educational interventions alone. The Graves et al., 2010 review documented positive changes of interventions on health outcomes as well as adherence. The review by Pai et al. (2014) found that compared with control interventions, effective adherence promotion interventions improved patient quality of life and family functioning and decreased healthcare utilization. Given the challenge of obtaining sample sizes large enough to adequately power intervention efficacy trials, there is a need for increased emphasis on collaborative and team research, including multisite studies. Additional areas that warrant increased focus include developing more culturally tailored interventions, adapting interventions to youth developmental level, expanding health systems- and community-level interventions, and promoting dissemination and implementation of effective interventions. Technology-based programs (e.g., web-based, text messaging, smartphone applications, and electronic monitors of adherence) may facilitate dissemination of effective adherence interventions into clinical settings and make them accessible for people across the United States and even worldwide.  

Resources

The Division 54 Adherence Special Interest Group maintains an online adherence intervention library, which highlights published clinical trial results from a variety of pediatric populations (https://div54adherencesig.weebly.com/intervention-library.html). The website also features clinical resources and adherence assessment tools available for download. (https://div54adherencesig.weebly.com/clinical.html).

  • Hommel, K. A., Ramsey, R. R., Rich, K. L., & Ryan, J. L. (2017). Adherence to Pediatric Treatment Regimens. In Handbook of Pediatric Psychology 5th Edition (pp. 119-133). New York, NY: The Guilford Press.
  • Modi, A.C. & Driscoll, K.A. (Eds.). (in press). Adherence and Self-Management in Pediatric Populations. Cambridge: Elsevier S&T Books.
  • Rapoff, M.A. (2010). Adherence to pediatric medical regimens (2nd ed.). New York: Springer
  • Drotar, D. (2000). Promoting Adherence to Medical Treatment in Chronic Childhood Illness: Concepts, Methods, and Interventions. New York: Psychology Press Taylor and Francis Group.

 

Authors: Julia K. Carmody, Ph.D., Ana M. Gutierrez-Colina, Ph.D., Kevin A. Hommel, Ph.D.

Date of last update: August, 2019

References


  1. 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.
  2. Hommel, K. A., Davis, C. M., & Baldassano, R. N. (2009). Objective versus subjective assessment of oral medication adherence in pediatric inflammatory bowel disease. Inflammatory Bowel Diseases, 15(4), 589-593.
  3. 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.
  4. Modi, A. C., Pai, A. L., Hommel, K. A., Hood, K. K., Cortina, S., Hilliard, M. E., ... & Drotar, D. (2012). Pediatric self-management: a framework for research, practice, and policy. Pediatrics, 129(2), e473-e485.
  5. 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.
  6. Pai, A. L., & McGrady, M. (2014). Systematic review and meta-analysis of psychological interventions to promote treatment adherence in children, adolescents, and young adults with chronic illness. Journal of pediatric psychology, 39(8), 918-931.
  7. Rapoff, M.A. (2010). Adherence to pediatric medical regimens (2nd ed.). New York: Springer
  8. 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.
  9. World Health Organization (2003). Adherence to long-term therapies: Evidence for action. Geneva, Switzerland.
  10. Wu, Y. P., & Hommel, K. A. (2014). Using technology to assess and promote adherence to medical regimens in pediatric chronic illness. The Journal of pediatrics, 164(4), 922-927.

 

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