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

Abstract

Objectives: Patient-reported outcome measures (PROMs) are widely applied to assess perceived health status. To date, no transplantspecific 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 5 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.

Muscle mass, muscle strength and mortality in kidney transplant recipients: results of the TransplantLines Biobank and Cohort Study

“…Nutritional counselling could be directed towards an adequate/higher intake of protein (including leucine content), optimal timing of meals, and sufficient intake or supplementation of omega‐3 fatty acids/fish oil and micronutrients, such as vitamin D. 35 , 41 The self‐reported importance of energy, fatigue, loss of strength and weight status for the health of transplant recipients further emphasizes the need for such multimodal interventions. 42 …”

Using a novel concept to measure outcomes in solid organ recipients provided promising results

“…In a previous study, we described how we selected health items for inclusion in the TXP to assess HRQoL in solid organ transplant recipients [22]. In the current study, we have built on this earlier work, showing how weights for the different levels of the nine health items were derived using an adapted type of preference-based methodology.…”

“…In a previous study, we conducted focus group discussions with solid organ recipients to select health items for the TXP [22]. Some of these participants also volunteered to contribute to the current study.…”

What really matters: a patient-centered instrument to evaluate health-related quality of life in cardiovascular disease

“…Comparable ePROMs based on a similar methodology have been recently applied to parents of 0–1-year-old infants, patients suffering from chronic pain, and transplant recipients. 7 , 14 , 15 Shahabeddin Parizi et al. proved that this methodology reliably quantifies HRQoL.…”