Measurement of Health-Related Quality of Life in Pediatric Organ Transplantation Recipients: A Systematic Review of the Pedsql Transplant Module

Background and Purpose: This systematic review sought to collect and assess the extant empirical literature assessing disease-specific health-related quality of life (HRQOL) in pediatric transplant recipients using the PedsQL 3.0 Transplant Module (PedsQL-TM) assessment. HRQOL in social work practice with children experiencing a chronic health condition involves assessing this multifaceted construct which encompasses a patient’s physical, social, and emotional well-being. Transplant social workers on transplant teams must consider the general and disease-specific HRQOL particular to a unique chronic illness or condition. Pediatric HRQOL has traditionally only been measured by conducting a general assessment of quality of life. Across pediatric organ transplantation research, the primary HRQOL measure has the PedsQL Generic Core 4.0 measure. In the decade since its development, the PedsQL-TM has been increasingly used in research with pediatric transplant recipients, but a systematic review of the psychometric evidence to support the use of the PedsQL-TM has not been conducted. With HRQOL considerations increasing in transplant social work practice and research, a comprehensive review of this disease-specific measure is timely and needed.

Methods:A systematic search and review procedure was conducted of research reporting use and results of the PedsQL-TM with samples of pediatric heart, liver, kidney, and lung transplantation.Search terms selected were each (“Pediatric Quality of Life Inventory” AND “transplant module”) and (“PedsQL” AND “transplant module”). Searches were conducted in nine scholarly databases and two additional sources to identify potentially unpublished research. Using Covidence software for facilitation of systematic reviews, multiple reviewers screened and reviewed for studies meeting inclusion criteria in accordance with PRISMA guidelines.

Results: From 429 initially identified studies, a final sample of nine studies reported findings for the PedsQL-TM with pediatric organ transplant recipients. Most studies relied on either kidney or liver transplant recipients from single pediatric transplant centers. Factor validity of the PedsQL-TM and inter-rater reliability between patients and parents were found not to have been adequately determined with the only factor analyses reported in the original validation study and that of a Japanese translated version. Additionally, the exploratory factor analysis within the original validity study did not utilize recommended factor analytic methods. Internal consistency reliability was found as acceptable or excellent across multiple studies. PedsQL-TM scores were found to vary with other HRQOL issues, yet few studies examined their association with critical health outcomes such as medication adherence or organ rejection.

Conclusions and Implications: With the goal of enhancing and sustaining HRQOL in pediatric organ transplant recipients, the need for a psychometrically valid and reliable measure of transplant-specific HRQOL in children is apparent. Social workers on transplant teams in national pediatric transplant centers have increasingly focused on HRQOL as a consideration during posttransplant care and as a primary health outcome for these children. Research on the PedsQL-TM supports the promise of this measure although future efforts should be taken to examine measurement issues such as factor validity and IRR. Assessing transplant-specific HRQOL in these patients is paramount for their care and appropriate decision-making by patients, families, and the transplant team.