Uncharted territories on pediatric heart and lung transplant patients’ health-related quality of life: A scoping review

Background: Although survival is good after pediatric heart transplantation (HTx) and steadily improving after pediatric lung transplantation (LTx), it remains unclear whether this also translates into a satisfactory health-related quality of life (HRQOL). Methods: This scoping review summarizes the findings on pediatric patients' overall HRQOL after HTx or LTx published in PubMed up to January 23, 2025. Data on study design, population characteristics, measurement methods, HRQOL definitions, and results are tabulated and described narratively for HTx and LTx separately. Results: Twenty-seven papers covering 24 original studies (3 qualitative and 21 quantitative) report on pediatric HTx' patients HRQOL. Most quantitative studies indicate that their HRQOL is generally good, both during childhood and into adulthood, and is comparable to that of healthy peers or children with other chronic conditions. However, the 3 qualitative studies portray more varied experiences, with the post-Tx trajectory being marked by ups and downs. Only 4 papers focus on pediatric LTx patients' HRQOL. The 2 prospective studies show a favorable HRQOL early post-Tx, while the 2 qualitative studies also report more mixed experiences. Nevertheless, studies are generally small, do not define HRQOL, use diverse measures, and exhibit substantial exclusion and refusal rates. Conclusions: While most studies present an optimistic view of pediatric patients' HRQOL, these findings should be interpreted with caution due to the methodological heterogeneity and selection bias present within the current evidence base. This review offers several directions for methodological improvement in future research, aiming to deepen our understanding of HRQOL in ALL pediatric cardiothoracic transplant patients.