Non-Adherence to Treatment is Multifactorial

When developing a treatment plan for a child, a clinician naturally hopes for adherence, but some children and families don’t always follow this guidance. This lack of adherence can lead to less than optimal outcomes with chronic health conditions. At the virtual 2021 Pediatric Academic Societies meeting, Cozumel S. Pruette, MD, MHS, assistant professor of pediatrics at the Johns Hopkins School of Medicine in Baltimore, Maryland, spoke about the impact of health literacy and racial, geographic, and economic modifiers on chronic kidney disease and organ transplants in children. She noted that there is a need for more research in the area.

Studies indicate that non-adherence to medication in chronic kidney disease range from 6% to 61% depending on the type of medication with nutrition supplements, phosphate binders, and growth hormones having the highest rates of non-adherence. With organ transplantation, prevalence differed with age, as teenagers were more likely to be non-adherent than younger patients. With organ transplants, the most common forms of non-adherence were missed appointments and tests. Examinations of health literacy indicated that neither the patient’s health literacy level nor the caregiver’s health literacy was linked to non-adherence, though Pruette did note that there are limited studies on health literacy and adherence in pediatric patients.

One examination of racial disparities in treatment adherence found that Black patients with chronic kidney disease had lower adherence rates than their non-Black peers. However, a different study, the Chronic Kidney Disease in Children study, found that non-adherence was more associated with White patients than other races or ethnicities. With organ transplants, studies in adults have shown greater non-adherence in Black patients, but a recent pediatric systematic review had conflicting results with half of the included studies indicating that Black patients were more likely to be non-adherent and half of the studies finding no difference in adherence to treatment in race/ethnicity groups.

Pruette briefly spoke on the difference in outcomes between the United States and other countries, finding higher immunosuppressant non-adherence in the United States than in Europe; lower 5- and 10-year survival rates for kidney transplants in the United States vs Canada, the United Kingdom, and Australia; and differences linked to longer or universal coverage of immunosuppressants as well as comprehensive health insurance access. Patients who live in rural areas may have limited access to specialty/compounded medications, which could lead to non-adherence. Lower socioeconomic status and public health insurance were also connected to non-adherence.

When treating a patient with a complex or chronic condition, clinicians should personalize the patient’s treatment plan to ensure improved adherence to the plan. This may involve ensuring that appointments or tests don’t impact work and school as well as working with the patient to find a medication regimen that will work.