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A Scoping Review of Key Health Items in Self-Report Instruments Used Among Solid Organ Transplant Recipients

Author

Listed:
  • Ahmad Shahabeddin Parizi

    (University of Groningen)

  • Paul F. M. Krabbe

    (University of Groningen)

  • Erik Buskens

    (University of Groningen)

  • Stephan J. L. Bakker

    (University of Groningen)

  • Karin M. Vermeulen

    (University of Groningen)

Abstract

The overall aim of this scoping review of the literature is twofold: (1) to provide an overview of all instruments that have been used to assess health-related quality of life (HRQoL) after solid organ transplantation and (2) to provide a list of health items they include to support future studies on the development of a new-generation HRQoL instrument. All studies that administered any form of HRQoL instrument to post-transplant solid organ recipients were identified in a comprehensive search of PubMed (MEDLINE), Embase, and Web of Science, with a cut-off date of May 2018. The search used various combinations of the following keywords: lung, heart, liver, kidney, or pancreas transplantation; quality of life; well-being; patient-reported outcome; instrument; questionnaire; and health survey. In total, 8013 distinct publications were identified and 1218 of these were selected for review. Among the instruments applied, 53 measured generic, 51 organ-specific, 271 domain-specific, and 43 transplant-specific HRQoL. A total of 78 distinct health items grouped into 16 sub-domains were identified and depicted graphically. The majority of publications did not report a logical rationale for the choice of specific HRQoL instrument. The most commonly used types of instruments were generic health instruments, followed by domain-specific instruments. Despite the availability of transplant-specific instruments, few studies applied these types of instruments. Based on the 78 items, further research is planned to develop a patient-centered, transplant-specific HRQoL instrument that is concise, easy to apply (mobile application), and specifically related to the health issues of solid organ recipients.

Suggested Citation

  • Ahmad Shahabeddin Parizi & Paul F. M. Krabbe & Erik Buskens & Stephan J. L. Bakker & Karin M. Vermeulen, 2019. "A Scoping Review of Key Health Items in Self-Report Instruments Used Among Solid Organ Transplant Recipients," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 12(2), pages 171-181, April.
    • Handle: RePEc:spr:patien:v:12:y:2019:i:2:d:10.1007_s40271-018-0335-3
    DOI: 10.1007/s40271-018-0335-3
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    References listed on IDEAS

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    1. Krabbe, Paul, 2016. "The Measurement of Health and Health Status," Elsevier Monographs, Elsevier, edition 1, number 9780128015049.
    2. Sullivan, Mark, 2003. "The new subjective medicine: taking the patient's point of view on health care and health," Social Science & Medicine, Elsevier, vol. 56(7), pages 1595-1604, April.
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