Patient-reported outcome measures for life participation in kidney transplantation: A systematic review

For many patients with end‐stage kidney disease, transplantation improves survival and quality of life compared to dialysis. However, complications and side‐effects in kidney transplant recipients can limit their ability to participate in activities of daily living including work, study and recreational activities. The aim of this study was to identify the characteristics, content and psychometric properties of the outcome measures used to assess life participation in kidney transplant recipients. We searched MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018 for all studies that reported life participation in kidney transplant recipients. Two authors identified instruments measuring life participation and reviewed for characteristics. In total, 230 studies were included: 19 (8%) randomized trials, 17 (7%) non‐randomized trials and 194 (85%) observational studies. Across these studies, we identified 29 different measures that were used to assess life participation. Twelve (41%) measures specifically assessed aspects of life participation (e.g. disability assessment, daily activities of living), while 17 (59%) assessed other constructs (e.g. quality of life) that included questions on life participation. Validation data to support the use of these measures in kidney transplant recipients were available for only seven measures. A wide range of measures have been used to assess life participation in kidney transplant recipients but validation data supporting the use of these measures in this population are sparse. A content relevant and validated measure to improve the consistency and accuracy of measuring life participation in research may inform strategies for transplant recipients to be better able to engage in their life activities