Measuring patients' experience with renal services in the UK: development and validation of the Kidney PREM

Abstract

Background Patient experience is a recognised aspect of quality of care for people with chronic kidney disease (CKD), but current patient-reported experience measures (PREMs) only focus on dialysis care. We developed and validated the Kidney PREM to assess patients’ experience with renal services in secondary care for any CKD stage or treatment (transplant, haemodialysis, peritoneal dialysis). Methods We developed the Kidney PREM in two phases, informed by a multidisciplinary expert group to ensure face validity. We organised three national data collections (2016 to 2018) to investigate item response profiles and to conduct exploratory and confirmatory analyses to assess internal consistency. We also explored content validity in cognitive interviews and evaluated test-retest reliability. Finally, we developed the Kidney PREM Short Form for more frequent measurement of patient experience to inform local service improvements. Results We analysed 32,959 responses across data collections, the 2018 collection covering all 71 UK renal centres. The Kidney PREM final version consisted of 38 items grouped in 13 themes, all pertaining to one underlying dimension reflecting the construct of ‘patient experience’ with high internal consistency (Cronbach’s α, .94). The Kidney PREM Short Form consisted of 15 items across the same 13 themes. Conclusions The Kidney PREM supports collection of reliable information on patient experience that people with CKD consider relevant, regardless of CKD stage or treatment modality. Kidney PREM data has the potential to guide local and national initiatives to improve patients’ experience with renal services in the UK and other countries.