In addition to medical and psychological support, social support plays a key role in the success of lung transplant recipients, especially in children. An important component of that social support for pediatric lung transplant recipients is school reentry. These children face daily challenges, which often have to be addressed by the transplant team with little existing guidance in the medical literature. In this article, we discuss relevant practice issues for pediatric lung transplant recipients with cystic fibrosis including heightened concern for infection risk, bullying, school performance, and body image concerns. In addition to discussing these important issues, we provide recommendations based on our experiences.

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.

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Introduction:Limited long-term survival is a recognized problem in adolescent/young adult lung transplant recipients. A quality improvement (QI) initiative included the development of a Lung Transplant Index (LTI) composed of key elements that we used as a comprehensive approach to screen and identify potential harms in this at-risk patient population.Methods:A single-center, uncontrolled QI study was completed from January 2014 to February 2019. The elements of the LTI are events that should have occurred within the most recent 12 months. If an element did not occur, it was counted as a missed element of preventing harm and summated later serving as the LTI score. Implementation of the LTI occurred on January 1, 2015, with a retrospective chart review of patients seen in clinic the prior year serving as baseline measures for comparison.Results:The year before implementing the LTI, numerous opportunities failed to identify preventable harm in our adolescent/young adult lung transplant population. The LTI resulted in a sustained reduction of these missed opportunities without negatively influencing patient/family satisfaction with lengthening of the clinic visit.Conclusions:A single-center QI initiative identified preventable harms in an adolescent/young adult lung transplant population and reduced the number of preventable harm elements not performed. Future work is needed to determine if this type of QI initiative is associated with less healthcare utilization.