TY - JOUR
T1 - Health items with a novel patient-centered approach provided information for preference-based transplant outcome measure
AU - Shahabeddin Parizi, Ahmad
AU - Krabbe, Paul
AU - Buskens, Erik
AU - van der Bij, Wim
AU - Blokzijl, Hans
AU - Hanewinkel, Vera
AU - Annema-de Jong, Coby
AU - Bakker, Stephan
AU - Vermeulen, Karin
PY - 2020/10
Y1 - 2020/10
N2 - Objectives: 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). Study Design and Setting: 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. Results: 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. Conclusion: 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.
AB - Objectives: 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). Study Design and Setting: 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. Results: 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. Conclusion: 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.
KW - Patient-reported outcome measure
KW - Health-related quality of life
KW - Patient-centered
KW - Preference-based
KW - Health item
KW - Transplant
KW - QUALITY-OF-LIFE
KW - REPORTED OUTCOMES
KW - EFFECTS QUESTIONNAIRE
KW - SYMPTOM EXPERIENCE
KW - INSTRUMENT
KW - VERSION
KW - IMPACT
KW - PROS
U2 - DOI: 10.1016/j.jclinepi.2020.06.017
DO - DOI: 10.1016/j.jclinepi.2020.06.017
M3 - Article
VL - 126
SP - 93
EP - 105
JO - Journal of Clinical Epidemiology
JF - Journal of Clinical Epidemiology
SN - 0895-4356
ER -