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Measurement of health-related quality of life in pediatric organ transplantation recipients: a systematic review of the PedsQL transplant module

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Abstract

Objective

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.

Study design

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. Searches were conducted in nine scholarly databases and two additional sources to identify unpublished research. Multiple reviewers screened studies meeting inclusion criteria in accordance with PRISMA guidelines.

Results

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 (IRR) between patients and parents have not been adequately determined. 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 medication adherence or posttransplant health outcomes.

Conclusions

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 is apparent. 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.

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Abbreviations

HRQOL:

Health-related quality of life

PedsQL-TM:

PedsQL 3.0 Transplant Module

PRISMA:

Preferred reporting items for systematic reviews and meta-analyses

ICC:

Intraclass correlations

IRR:

Inter-rater reliability

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Funding

No funding supported this study.

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Authors and Affiliations

  1. College of Social Work, Florida State University, 296 Champions Way, UCC 3407, Tallahassee, FL, 32306, USA

    Michael O. Killian & Jason Boehler

  2. Solid Organ Transplant Program, Children’s Health – Children’s Medical Center, Dallas, TX, USA

    Michael O. Killian & Kelli N. Triplett

  3. The University of Texas Southwestern Medical Center, Dallas, TX, USA

    Kelli N. Triplett & Saba S. Masood

  4. St. Louis Children’s Hospital, St. Louis, MO, USA

    Gillian S. Mayersohn

  5. Washington University School of Medicine, St. Louis, MO, USA

    Gillian S. Mayersohn

Authors
  1. Michael O. Killian
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  2. Kelli N. Triplett
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  3. Saba S. Masood
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  4. Jason Boehler
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  5. Gillian S. Mayersohn
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Correspondence to Michael O. Killian.

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Killian, M.O., Triplett, K.N., Masood, S.S. et al. Measurement of health-related quality of life in pediatric organ transplantation recipients: a systematic review of the PedsQL transplant module. Qual Life Res 29, 1137–1146 (2020). https://doi.org/10.1007/s11136-019-02398-0

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