Abstract
Background: 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.
Aim: To describe the Scottish Renal Registry’s (SRR) experience of collecting PROMS in the haemodialysis population and correlate PROMS to demographic and clinical parameters.
Design: Retrospective observational cross-sectional study.
Methods: 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.
Results: 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%) [χ2 p=0.006]; duration of renal replacement therapy (<1 year 46%, ≥1 < 5 years 38%, ≥ 5 years 33%) [χ2 p=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%) [χ2 p<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.
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.
Aim: To describe the Scottish Renal Registry’s (SRR) experience of collecting PROMS in the haemodialysis population and correlate PROMS to demographic and clinical parameters.
Design: Retrospective observational cross-sectional study.
Methods: 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.
Results: 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%) [χ2 p=0.006]; duration of renal replacement therapy (<1 year 46%, ≥1 < 5 years 38%, ≥ 5 years 33%) [χ2 p=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%) [χ2 p<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.
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.
| Original language | English |
|---|---|
| Pages (from-to) | 15-21 |
| Number of pages | 7 |
| Journal | QJM : an International Journal of Medicine |
| Volume | 111 |
| Issue number | 1 |
| Early online date | 18 Sept 2017 |
| DOIs | |
| Publication status | Published - 1 Jan 2018 |
Keywords
- Hemodialysis
- Hemoglobin
- Censuses
- Demography
- Phosphates
- Scotland
- Kidney
- Urea reduction ratio
- Patient reported outcome measures
- Age Distribution
- Prevalence
- Humans
- Middle Aged
- Male
- Scotland
- Young Adult
- Renal Dialysis/statistics & numerical data
- Adult
- Female
- Registries
- Renal Insufficiency/therapy
- Surveys and Questionnaires
- Retrospective Studies
- Patient Reported Outcome Measures
- Cross-Sectional Studies
- Analysis of Variance
- Adolescent
- Quality of Life
- Sex Distribution
- Aged
ASJC Scopus subject areas
- Medicine(all)