E DUNCANSON1, P N. BENNETT2, A K. VIECELLI3, K DANSIE1, L M. GREENHAM1, A TONG4, S JESUDASON1,5,6, S P. MCDONALD1,5,6, R L. MORTON7
1Australia and New Zealand Dialysis and Transplant Registry and SA Health and Medical Research Institute, Adelaide, Australia, 2Satellite Healthcare, San Jose, United States, 3Department of Nephrology, Princess Alexandra Hospital, Woolloongabba, Brisbane, Australia, 4Centre for Kidney Research, Westmead hospital, Westmead, Australia, 5Royal Adelaide Hospital, Adelaide, Australia, 6Adelaide Medical School, University of Adelaide, Adelaide, Australia, 7NHMRC Clinical Trials Centre, The University of Sydney, Camperdown, Australia
Aim: To describe the perspectives and experiences of nephrologists, nurses, and patients receiving haemodialysis, about acceptability and feasibility of electronic patient-reported outcome measures (e-PROMs) collection with feedback to clinicians.
Background: The “Symptom monitoring With Feedback Trial” (SWIFT) will assess whether 3-monthly symptom monitoring using the IPOS-Renal questionnaire with feedback to clinicians with evidence-based symptom management summaries, can improve health-related quality of life for adults managed with haemodialysis. It is unclear whether regular collection of this data using tablet computers, and provision of symptom scores is acceptable and feasible in the Australian setting.
Methods: The SWIFT pilot study collected e-PROMs between September 2019-March 2020, from four Australian dialysis units. Qualitative interviews and focus groups with 38 participants (13 nephrologists, 15 dialysis nurses, 10 patients receiving haemodialysis) on barriers and enablers to uptake and implementation of e-PROMs were undertaken. Transcripts were analysed thematically guided by Normalisation Process Theory.
Results: e-PROMs collection at 3 or 6-month intervals was considered efficient and feasible to patients and nurses, however, reliant on stable wireless hospital internet access. All participant groups stated nurse-led assistance in data collection and entry was critical to patient participation, however, could be burdensome for nurses. Nephrologists and nurses agreed feedback of symptom scores should inform clinical consultations to trigger a change in management. Nephrologists requested e-PROMs be incorporated into patients’ electronic medical records and that temporal patient and unit-level PROMs data would enable evaluation of symptom management interventions.
Conclusions: Clinician engagement, reliability of technology, timely presentation of symptom scores, and actions undertaken to address symptom burden are likely to improve acceptability and impact of symptom monitoring. These findings have improved the SWIFT main trial design.
Professor Rachael Morton (PhD, MSc(Clin Epi)(Hons)) is a senior health economist. She is Director of Health Economics at the NHMRC Clinical Trials Centre and Professor in the Faculty of Medicine and Health, University of Sydney where she leads a specialised team of economists and economic modellers. She has published >150 research articles, and won >$50M in competitive research grants. Professor Morton is Chair of the patient reported outcome measures (PROMs) working group for ANZDATA, and the lead health economist for many kidney research projects including CARSK, MODUS and SWIFT.