Medical adherence in pediatric organ transplantation: what are the next steps?

Adherence within pediatric transplantation has gained importance as the complexities of long-term medical management of these patients are identified and knowledge regarding the negative consequences of nonadherence accumulates. We review recent findings to highlight gaps in the literature and make suggestions for future directions.

Most research has focused on medication nonadherence, and a recent meta-analysis indicates that nonadherence is more prevalent in adolescent transplant recipients than in younger children. Nonadherence to other areas of the regimen (e.g. clinic attendance) may be even more common than medication nonadherence. However, work to date is based primarily on kidney and liver pediatric transplant patients, with a paucity of research on heart, lung and intestinal recipients. Risk factors for nonadherence after pediatric transplantation include poor family and child functioning. Intervention research remains rare. Challenges include the need for clearer definitions of what constitutes clinically significant nonadherence, longitudinal and prospective assessment of a wider range of potential risk factors, and the development and evaluation of interventions to treat or prevent nonadherence.

Adherence research in pediatric transplantation is in its infancy. Significant opportunities exist to advance the field and create standards for effective identification, measurement, and treatment of nonadherence.