Education and Employment After Lung Transplantation in Adolescents and Young Adults

Pediatric transplant recipients experience barriers to social functioning, including participation in school and work, but our understanding of barriers to these activities is limited by insufficient data collection and standardization. Existing studies rely on cross-sectional surveys of transplant survivors that are subject to survivorship and nonresponse bias, or analyses of large registry data that lack detail on educational progress and work participation. We report our experience using the electronic medical record to retrospectively review work and educational attainment in this population, and identify specific barriers that were encountered and how they were addressed by the patient and care team. We reviewed current literature on post-transplant survey participation and compared questionnaires to our current documentation practice for tracking education and employment progress in the transplant recipient population. Based on this review, we discuss the possibility, barriers, and implications of conducting a standardized assessment to track social participation outcomes of transplantation.