Dr Kim Jose1, Professor Jan Radford2, Assoc. Prof Rajesh Raj3, Ms Lisa Shelverton4, Ms Carolyn Baker4, Dr Georgia McGrath1, Mr Jan Priest5, Mr Jimmy Ellenberger5, Mr David Wightman5, Ms Carolyn Gutteridge5, Mr Peter Gutteridge5, Prof. Matthew Jose4,6
1Menzies Institute for Medical Research, Hobart, Australia, 2Launceston Clinical School, Tasmanian School of Medicine, University of Tasmania, Launceston, Australia, 3Renal Department, Launceston General Hospital, Tasmanian Health Service, Launceston, Australia, 4Renal Department, Royal Hobart Hospital, Tasmanian Health Service, Hobart, Australia, 5Consumer co-researcher, , Australia, 6Hobart Clinical School, Tasmanian School of Medicine, University of Tasmania, Hobart, Australia
Biography:
Matthew Jose is a bushwalker, photographer and mountain runner who in his spare time works an academic renal physician, Head of the Renal Unit at the Royal Hobart Hospital, and Professor of Medicine for the University of Tasmania.
Aim:
Work with consumers, caregivers and health professionals to understand if and how findings from the CKD.TASlink study could help consumers choose care options.
Background:
The CKD.TASlink data provides new information on chronic kidney disease (CKD) in Tasmania. The research highlights that, for older individuals on dialysis compared to those not on dialysis, there is little difference in their out-of-hospital and non-dialysis DAYS-ALIVE, particularly for those aged 85+ years.
Methods:
Using a multi-disciplinary codesign approach, three in-person focus groups were held with consumers across Tasmania and one online group with health professionals (N = 22). Consumers, caregivers and health professionals were invited to discuss the CKD.TASlink data to determine if the information would be useful and how best to share it. This was followed by two co-design workshops with 20 participants.
Results:
Consumer participants thought the CKD.TASlink data usefully informed decisions about care but considered the conservative (supportive) care pathway to be unclear as practical details about this pathway were lacking. Health professionals also reported that there were less information/resources to share about the conservative care pathway. Consumers wanted to be able to compare dialysis and supportive care treatment options and outcomes informed by research findings, embedded in relatable scenarios and accessible via different formats with opportunities to ask questions (including hearing from peers). Resources (written, video and audio) were developed.
Conclusions:
Consumers, caregivers and health professionals said that having additional information from the CKD.TASlink study would help to make more informed decisions about treatment options. It was suggested that this information should be presented in ways designed to support consumer decision making.
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