Patient-reported outcome measures for life participation in patients with chronic kidney disease: a systematic review

Abstract

Abstract Background The symptoms, comorbidities and treatment burden associated with chronic kidney disease (CKD) can be debilitating and limit life participation in patients with CKD not requiring kidney replacement therapy (KRT). The aim of this study was to identify the characteristics, content, and psychometric properties of patient-reported outcome measures (PROMs) used to assess life participation in patients with CKD. Methods We searched MEDLINE, Embase, PsycINFO, and CINAHL from database inception to February 2023 for all studies that reported life participation in patients with CKD (Stage 1–5 not requiring kidney replacement therapy). We analyzed the characteristics, dimensions of life participation and psychometric properties of the measures. Results From the 114 studies included, 20 (18%) were randomized trials, 3 (3%) were non-randomized trials, and 91 (80%) were observational studies. Forty-one different measures were used to assess life participation, of which six (15%) were author-developed measures. Twelve (29%) measures assessed life participation specifically, while 29 (71%) measures assessed broader constructs such as quality of life, which included questions relevant to life participation. The 36-Item Short Form Health Survey (SF-36) and Kidney Disease Quality of Life—Short Form (KDQOL-SF) were the most frequently used, in 39 (34%) and 24 (21%) studies, respectively. Many content domains for life participation were assessed including physical activities (walking, running, and sports), social activities, leisure activities, work or study and self-care. None of the measures for life participation were developed specifically for CKD. Four measures (EQ-5D-3 L, FACT-An, SF-6D, and SF-36) had validation data collected in patients with CKD. Conclusion The measures for life participation used in patients with CKD vary in content with few validated in the CKD population. There is a need for a validated measure to assess life participation in a meaningful and consistent way in all patients with CKD worldwide.