Developing a Set of Core Patient-Reported Outcomes for Kidney Replacement Therapy: A Modified Delphi Study.

The findings are stakeholder consensus, not evidence that the selected questionnaires improve patient care or outcomes. Participants were recruited through existing PROM and registry networks, so views may not represent all kidney units or patients. Eligibility excluded non-English speakers, and culturally and linguistically diverse patients were under-represented. International experts mostly did not attend the workshop, so the final consensus largely reflects Australia and New Zealand. Consumers were fewer than clinicians and researchers in the workshop, which may have affected the final PROM choice. The study did not test how patients complete the PROMs or whether nurses can use the results in routine care.

One author reported funding from NIHR Birmingham Biomedical Research Centre, NIHR Applied Research Collaboration West Midlands, an NIHR Blood and Transplant Research Unit, LifeArc, Innovate UK, The Health Foundation, Gilead Sciences, Merck, Anthony Nolan, GSK and Sarcoma UK, plus personal fees from Gilead Sciences, Merck, Boehringer Ingelheim, Innovate UK and GSK. Another reported personal fees from CSL Seqirus and AstraZeneca. The work was funded by a Clinical Quality Register Module capacity-building programme, an Australian Government Research Training Programme fee offset, a University of Sydney Faculty of Medicine and Health Flagship Centres Scholarship, and an Australian National Health and Medical Research Council Investigator Fellowship.

Do not read this as proof that the EQ-5D-5L and IPOS-Renal improve kidney replacement therapy care. It reports consensus on registry data collection and does not test patient outcomes.