Educational Needs of the Adolescent Transplant Recipient: A Developmental Approach to Understanding Transplant

As pediatric transplant patients reach adolescence, care teams must prepare them for an eventual transition to adult-oriented care. Care teams must provide patients with the necessary knowledge and skills to manage their medical needs independently, but the level of learning required to successfully self-manage a transplant is substantial. Furthermore, adolescence is also a dynamic developmental period that includes significant cognitive development and changes in social motivations.

Within this report, we offer insights into some of the key developmental mechanisms of adolescence that may influence their learning in a medical context. We also review key concepts that should be included in patient education across a range of domains. Finally, we consider how patients with comorbid developmental disorders may require tailored education.

Key domains for education include (1) personal health history, (2) medication knowledge/adherence, (3) navigation of the healthcare system, and (4) communication with others about their health. Teams should intentionally track patient progress in their education, although few formalized tools are currently available to support tracking. Accommodations to learning for patients with developmental needs include varied instructional modalities (e.g., verbal, written, and modeling), opportunities to practice skills in a controlled manner, and establishment of family/community support that can persist into adulthood.

Education of transplant patients is a critical but long-term process that supports the successful transition to adulthood. Care teams should develop intentional plans to transfer knowledge and build skills across adolescence, while remaining open to adaptive approaches to support the learning of all patients.