Of course, when developing a treatment plan for a child, a doctor hopes for compliance, but some children and families do not always follow these guidelines. This lack of adherence can lead to less than optimal results in chronic health conditions. At the 2021 Virtual Meeting of Pediatric Academic Societies, Cozumel S. Pruette, MD, MHS, assistant professor of pediatrics at Johns Hopkins School of Medicine in Baltimore, Maryland, spoke about the impact of health literacy and racial, geographic and economic factors on chronic kidney disease and organ transplants in children. She noted that there is a need for more research in the area.
Studies show that medication non-compliance in chronic kidney disease ranges from 6% to 61%, depending on the type of medication with dietary supplements, phosphate binders and growth hormones with the highest level of non-adherence. In organ transplantation, prevalence differed with age, as teenagers were more likely to be non-adherent than younger patients. In organ transplants, the most common forms of non-compliance were missed appointments and tests. Health literacy research indicated that neither the patient’s health literacy level nor the caregiver’s health literacy was associated with non-adherence, although Pruette noted that there are limited studies of health literacy and adherence in pediatric patients.
A study of racial differences in adherence found that black patients with chronic kidney disease had lower adherence than their non-black peers. However, another study, the Chronic Kidney Disease in Children study, found that non-adherence was more associated with white patients than with 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 found that no difference in adherence across racial / ethnic groups.
Pruette spoke briefly about the difference in outcomes between the United States and other countries and found higher immunosuppressive non-adherence to therapy in the United States than in Europe; lower 5 and 10 year survival rates for kidney transplants in the United States versus Canada, the United Kingdom, and Australia; and differences related to extended or universal immunosuppressant coverage and comprehensive health insurance. Patients living in rural areas may have limited access to specialty / compound drugs, which may lead to non-compliance. Lower socioeconomic status and public health insurance were also linked to non-compliance.
When treating a patient with a complex or chronic condition, clinicians should personalize the patient’s treatment plan to ensure better adherence to the plan. This may mean making sure appointments or tests don’t affect work and school, and working with the patient to find a medication regimen that works.