Abstract
Background
Patients with kidney failure on hemodialysis (HD) experience considerable symptom burden and poor health-related quality of life (HRQoL). There is limited use of patient reported outcome measures (PROMs) in facility HD units to direct immediate care, with response rates in other studies between 36 to 70%. The aim of this pilot study was to evaluate feasibility of electronic PROMs (e-PROMs) in HD participants, with feedback 3-monthly to the participants’ treating team, for severe or worsening symptoms as identified by the Integrated Palliative Outcome Scale (IPOS-Renal), with linkage to the Australian and New Zealand Dialysis and Transplant (ANZDATA) registry, compared with usual care.
Methods
This is a registry-based cluster-randomized controlled pilot trial involving all adults receiving HD in 4 satellite units in Australia over a 6-month period. HD units were cluster randomized 1:1 to the control (HRQoL data collection only) or intervention arm (symptom monitoring with feedback to treating team every 3 months). Feasibility was assessed by participant response rate (percentage of eligible HD participants, including new incident participants, who completed the questionnaire at each time point); retention rate (percentage of participants who completed the baseline questionnaire and all subsequent measures); and completion time. HRQoL and symptom burden scores are described.
Results
There were 226 unique participants who completed the e-PROMs (mean age 62 years, 69% males, 78% White-European, median dialysis vintage 1.62 years). At 6 months, response rate and retention rate for the intervention arm were 54% and 68%, respectively, and 89% and 97% in the control arm. Median time to complete IPOS-Renal was 6.6 min (5.3, 10.1) at 3 months, and when combined with the outcome measure (EQ-5D-5L), the median time was 9.4 min (6.9, 13.6) at 6 months.
Conclusions
Electronic symptom monitoring among HD participants with feedback to clinicians is feasible. Variations in response and retention rates could be potentially explained by the lengthier questionnaire, and higher frequency of data collection time points for participants in the intervention arm. A definitive national RCT is underway.
Patients with kidney failure on hemodialysis (HD) experience considerable symptom burden and poor health-related quality of life (HRQoL). There is limited use of patient reported outcome measures (PROMs) in facility HD units to direct immediate care, with response rates in other studies between 36 to 70%. The aim of this pilot study was to evaluate feasibility of electronic PROMs (e-PROMs) in HD participants, with feedback 3-monthly to the participants’ treating team, for severe or worsening symptoms as identified by the Integrated Palliative Outcome Scale (IPOS-Renal), with linkage to the Australian and New Zealand Dialysis and Transplant (ANZDATA) registry, compared with usual care.
Methods
This is a registry-based cluster-randomized controlled pilot trial involving all adults receiving HD in 4 satellite units in Australia over a 6-month period. HD units were cluster randomized 1:1 to the control (HRQoL data collection only) or intervention arm (symptom monitoring with feedback to treating team every 3 months). Feasibility was assessed by participant response rate (percentage of eligible HD participants, including new incident participants, who completed the questionnaire at each time point); retention rate (percentage of participants who completed the baseline questionnaire and all subsequent measures); and completion time. HRQoL and symptom burden scores are described.
Results
There were 226 unique participants who completed the e-PROMs (mean age 62 years, 69% males, 78% White-European, median dialysis vintage 1.62 years). At 6 months, response rate and retention rate for the intervention arm were 54% and 68%, respectively, and 89% and 97% in the control arm. Median time to complete IPOS-Renal was 6.6 min (5.3, 10.1) at 3 months, and when combined with the outcome measure (EQ-5D-5L), the median time was 9.4 min (6.9, 13.6) at 6 months.
Conclusions
Electronic symptom monitoring among HD participants with feedback to clinicians is feasible. Variations in response and retention rates could be potentially explained by the lengthier questionnaire, and higher frequency of data collection time points for participants in the intervention arm. A definitive national RCT is underway.
| Original language | English |
|---|---|
| Article number | 345 |
| Journal | BMC Nephrology |
| Volume | 24 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - 22 Nov 2023 |
Bibliographical note
Funding Information:The SWIFT pilot is supported by a Kidney Health Australia Medical and Scientific Research Funding Grant (KHA2018-RM); a Jacquot Research Establishment Grant; a Princess Alexandra Research Foundation Research Grant; and a National Health and Medical Research Council (NHMRC) BEAT-CKD Program Grant (APP1092957). RLM is supported by an NHMRC Investigator Grant (APP1194703), and University of Sydney, Robinson Fellowship. BS is supported by a Jacquot Research Establishment Fellowship from the Royal Australasian College of Physicians. The funders played no role in the study design, data collection, analysis, reporting, or the decision to submit for publication.
Funding Information:
We thank the patient-partners in research design [who are not listed co-authors]; and gratefully acknowledge the participants, nursing, and medical staff for their support of this trial. Collaborators SWIFT Investigators include: Carmel Hawley (Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia), David W Johnson (Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia), David Harris (Department of Renal Medicine, Westmead, Australia), Lilliana Laranjo (University of Sydney, Australia), Cecile Couchoud (Agence de la biomédecine, REIN Registry, France), Fergus J Caskey (University of Bristol, UK), Suetonia Palmer (University of Otago, New Zealand), Matthew Jose (University of Tasmania, Australia), R. John Simes (University of Sydney, Australia), Braden Manns (University of Calgary, Canada), William Handke (Consumer Representative, Australia), Enrico Coiera (Macquarie University, Australia), Rebecca Mister (University of Sydney, Australia), Portia Westall (University of Sydney, Australia).
Publisher Copyright:
© 2023, The Author(s).
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