Health items with a novel patient-centered approach provided information for preference-based transplant outcome measure

• Published in: Journal of clinical epidemiology Vol. 126; pp. 93 - 105
• Main Authors: Shahabeddin Parizi, Ahmad, Krabbe, Paul F.M., Buskens, Erik, van der Bij, Wim, Blokzijl, Hans, Hanewinkel, Vera, Annema, Coby, Bakker, Stephan J.L., Vermeulen, Karin M.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.10.2020; Elsevier Limited
• Subjects: Adult; Aged; Aged, 80 and over; Cell Phone - instrumentation; Data collection; Epidemiology; Female; Focus Groups; Health item; Health Status; Health-related quality of life; Humans; Literature reviews; Liver transplantation; Male; Medical research; Meetings; Middle Aged; Outcome Assessment, Health Care; Patient Participation - psychology; Patient Participation - statistics & numerical data; Patient Reported Outcome Measures; Patient satisfaction; Patient-centered; Patient-centered care; Patient-Centered Care - methods; Patient-Centered Care - standards; Patient-reported outcome measure; Polls & surveys; Preference-based; Preferences; Quality of life; Quality of Life - psychology; Sexuality; Surveys and Questionnaires; Transplant; Transplant Recipients - psychology; Transplant Recipients - statistics & numerical data; Transplants & implants; Health-related quality of life; Preference-based; Patient-centered; Patient-reported outcome measure; Health item; Transplant
• ISSN: 0895-4356; 1878-5921
• DOI: 10.1016/j.jclinepi.2020.06.017

Patient-reported outcome measures (PROMs) are widely applied to assess perceived health status. To date, no transplant-specific PROM is available for generating a single, standardized score regarding the health status of transplant recipients. The objective of this study is to generate health items for a new patient-centered PROM for organ recipients: the Transplant PROM (TXP). A five-phase, mixed-method approach was applied to identify and select the health items: scoping literature review, expert meetings, focus-group meetings with organ recipients, a special judgmental task within an online survey, and expert meetings for final selection of health items. Based on a previously published scoping literature review, a first round of expert meetings, and a total of four focus-group meetings with kidney, lung, and liver transplant recipients (N = 18), a list of 83 relevant health items relating to post-transplant life was selected. In an online survey, 183 transplant recipients selected the 10 most important health items from this list. After evaluating the frequency of selected health items and combining items that assess closely related or similar concepts in the second round of expert meetings, nine health items were chosen to be included in TXP: fatigue, skin, worry/anxiety, self-reliance, activities, weight, sexuality, stooling, and memory/concentration. The nine TXP health items reflect the most prominent issues transplant recipients experience. The TXP can be administered by means of a mobile phone app. •Health items of existing transplant-specific PROMs were identified mainly by experts, without any patient involvement. However, there is now a shift toward a patient-centered approach that emphasizes patient involvement and advocacy. It is necessary to develop a distinctive, patient-centered, transplant-specific PROM.•We aimed to identify and select health items for a new transplant-specific PROM (TXP) by applying a fully patient-centered approach. Our ultimate aim is to develop a short, easily comprehensible preference-based PROM that can be integrated into routine care in a meaningful way while posing a minimal burden on patients and care providers.•TXP is a new transplant-specific PROM which provides transplant recipients, clinicians, and researchers with a convenient tool for measuring and monitoring the overall trend of HRQOL during the post-transplant period.