R MORTON1, K DANSIE2, P N. BENNETT3, E DUNCANSON2, A K. VIECELLI4, S JESUDASON2,5,6, C BROWN1, L LARANJO7, S C. PALMER8, W A. HANDKE9, A TONG10, M D. JOSE11, D W. JOHNSON4, D C. HARRIS7,12, R MISTER1, P WESTALL1, J R. SIMES1, S P. MCDONALD2,5,6
1University Of Sydney, NHMRC Trials Centre, Camperdown, Australia, 2Australia and New Zealand Dialysis and Transplant Registry and SA Health and Medical Research Institute, Adelaide, Australia, 3Satellite Healthcare, San Jose, United States, 4Princess Alexandra Hospital, Brisbane, Australia, 5Royal Adelaide Hospital, Adelaide, Australia, 6Adelaide Medical School, University of Adelaide, Adelaide, Australia, 7University of Sydney, Camperdown, Australia, 8University of Otago, Christchurch, New Zealand, 9Private Citizen, Kambah, Australia, 10Centre for Kidney Research, Westmead Hospital, Westmead, Australia, 11University of Tasmania, Hobart, Australia, 12Westmead Hospital, Westmead, Australia
Aim: To determine technical feasibility and patient-clinician acceptability of electronic tablet-based data capture and feedback of 3-monthly symptom monitoring using the Integrated Palliative Outcome Scale-Renal (IPOS-Renal) within an ANZDATA registry-based randomised trial.
Background: We designed a registry-based randomised trial to test whether the collection and feedback of symptoms improves health-related quality of life (HR-QoL) among adults with kidney failure managed with facility haemodialysis.
Methods: Haemodialysis units were cluster randomised to 3-monthly symptom monitoring with feedback to clinicians plus 6-monthly HR-QoL using EQ-5D-5L questionnaire (intervention group); vs HR-QoL alone (control group). Feasibility and acceptability outcomes included, 1) individualised survey generation using QR codes linked to ANZDATA records; 2) patient completion rates and times; 3) delivery of individualised symptom reports.
Results: Technical feasibility was demonstrated by successful development of a Qualtrics survey platform presented on tablet computers, use of QR reader codes to verify correct patients from ANZDATA, with a link to the relevant survey for the patient’s allocation and study timepoint. 226 patients (intervention =109; control =117), from 4 Australian units with median dialysis vintage of 1.6 years, mean age 62 years, 31% females, completed at least one symptom or HR-QoL measure, (72% of eligible patients, range 44-90%). Mean completion time was 6.5 minutes for IPOS-Renal (66% nurse assisted), 3.5 minutes for EQ-5D-5L. Consolidated symptom feedback reports and evidence-based symptom management guidelines for nephrologists and dialysis nurse managers were delivered electronically within 2 weeks of measurement.
Conclusion: Electronic symptom monitoring in adults on hemodialysis with feedback to clinicians is feasible. These data support the commencement of the definitive trial in 3,072 patients, and provide a framework for national collection of patient reported outcomes.
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.