Collection and determinants of patient reported outcome measures in haemodialysis patients in Scotland

Patient reported outcome measures (PROMs) can evaluate the quality of health in patients with established renal failure. There is limited experience of their use within national renal registries.To describe the Scottish Renal Registry's (SRR) experience of collecting PROMS in the haemodialysis population and correlate PROMS to demographic and clinical parameters.Retrospective observational cross-sectional study.Haemodialysis patients in Scotland were invited to complete the KDQOL™-36 questionnaire on the day of the annual SRR census in 2015 and 2016. Questionnaires were linked to census demographic and clinical variables.In 2016, 738 questionnaires were linked to census data (39% of prevalent haemodialysis population). Response rates differed with age (≥ 65 years 42%, 65 years 36%) [χ2P = 0.006]; duration of renal replacement therapy (1 year 46%, ≥1 5 years 38%, ≥ 5 years 33%) [χ2P = 0.002] and social class (Scottish Index of Multiple Deprivation (SIMD) Class 1 32%, Class 2 41%, Class 3 40%, Class 4 48%, Class 5 40%) [χ2P 0.001]. There were significant differences in PROMs with age, SIMD quintile and primary renal diagnosis. Achieving a urea reduction ratio of 65% and dialysing through arteriovenous access were associated with significantly higher PROMs. PROMs were not affected by haemoglobin or phosphate concentration.Routine collection of PROMs is feasible and can identify potentially under-recognized and treatable determinants to quality of life. The association between attaining recommended standards of care and improved PROMs is striking. Individual and population-wide strategies are required to improve PROMs.