Patient Perspectives of Center-Specific Reporting in Kidney Failure Care: An Australian Qualitative Study

Abstract

IntroductionPublic reporting of quality of care indicators in healthcare is intended to inform consumer decision-making, however people may be unaware such information exists or it may not capture their priorities. The aim of this study was to understand the views of people with kidney disease about public reporting of dialysis and transplant centre outcomes. MethodsThis qualitative study involved twenty-seven patients with lived experience of kidney disease in Australia who participated across eleven online focus groups between August and December 2022. Transcripts were analysed thematically. ResultsPatients from all Australian states and territories participated, with 22 (81%) having a functioning kidney transplant and 22 (81%) having current or previous experience of dialysis. Five themes were identified: 1) Surrendering to the health system, 2) The complexity of quality, 3) Benefits for patient care and experience, 4) Concerned about risks and unintended consequences, 5) Optimising the impact of data. ConclusionPatients desire choice among kidney services but perceive this as rarely possible in the Australian context. Health professionals are trusted to make decisions about appropriate centres. Public reporting of centre outcomes may induce fear and a loss of balanced perspective, but was supported by all participants and represents an opportunity for self-advocacy and informed decision-making. Strategies to mitigate potential risks include availability of trusted clinicians and community members to aid in data interpretation, providing context about centres and patients, and framing statistics to promote positivity and hope.