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

Abstract

Collection and determinants of patient reported outcome measures in haemodialysis patients in ScotlandNimmo, A.; Bell, S.; Brunton, C.; Campbell, J.; Doyle, A.; Mackinnon, B.; Peel, R. K.; Robertson, S.; Shilliday, I.; Spalding, E.; Traynor, J. P.; Metcalfe, W.; On behalf of the Scottish Renal Registry General rights Copyright and moral rights for the publications made accessible in Discovery Research Portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.• Users may download and print one copy of any publication from Discovery Research Portal for the purpose of private study or research.• You may not further distribute the material or use it for any profit-making activity or commercial gain.• You may freely distribute the URL identifying the publication in the public portal. 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. Conclusions:Routine collection of PROMs is feasible and can identify potentially under-recognised 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.

Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease – a four-phase mixed methods study

“…patients, healthcare professionals and researchers) [51]. Furthermore, barriers may be encountered when implementing PROMs into routine care, including low response rates, organizational struggles or low commitment from patients or healthcare professionals [11]. To facilitate implementation and sustainability, it is vital to take these barriers into account, by, for example, providing information and communication systems to adequately collect data and discuss PROM-scores.…”

“…Also in nephrology, routine collection of PROMs can be of added value. [11] Patients with advanced chronic kidney disease (CKD) experience a poor health-related quality of life (HRQOL) and numerous physical and emotional disease related symptoms [12–14]. Moreover, in patients with advanced CKD, HRQOL levels generally decrease and symptom burden generally increases as the disease progresses [15].…”

“…Although the relevance of patients’ perspective is recognized, PROMs have not yet been widely implemented in nephrology [2, 9, 11]. Currently, methods and instruments needed for implementation of PROMs in patients with advanced CKD, including patients with end-stage kidney disease (ESKD) with and without dialysis, are being explored in the Netherlands.…”

Patient-reported outcome measures as a new application in the Swedish Renal Registry: health-related quality of life through RAND-36

“…The response rate in the HD population was low, with a large variation between the participating units. A low response rate was also seen when implementing PROMs among HD patients within the SRR [ 34 ], where the response rate initially was 29%. Clearly this highlights the challenge and the efforts needed to succeed in implementing new routines and systematic and nationwide collection of PROMs.…”

Funnel plots of patient‐reported outcomes to evaluate health‐care quality: Basic principles, pitfalls and considerations

“…Furthermore, various outcomes can provide insight into health‐care quality and should be taken into account when evaluating hospital performances. Nowadays, patient‐reported outcomes (PROs; eg, health‐related quality of life [HRQOL] and symptom burden) are considered important health‐care outcomes and PRO measures (PROMs) are increasingly being implemented into routine care, including nephrological care 10‐13 . Therefore, the logical next step is to include PROs—in addition to clinical outcomes—in the process of health‐care quality evaluation.…”