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Enhancing patients’ quality of life, empowerment, quality of decision making and disease control
Lead Investigators: A/Prof Susan Connor, Dr Andrew Kim
Sites: Liverpool Hospital, NSW (South West Sydney Local Health District) (Lead Site)
This study is being conducted across multiple sites across NSW, SA, QLD, VIC and WA.
Project overview and aims:
Our researchers are always looking for ways to improve the quality of lives of those living with IBD. This project implements a model called shared decision making (SDM) which encourages patients to have an active role in managing their own health and treatment. This is undertaken using decision aids (DAs) which are tools to help patients to understand their disease and treatment options. This project is being conducted to assess preferences, challenges and quality of life in patients with ulcerative colitis (UC) and test the efficacy of an internet based decision tool: ‘my actively informed decision’ (myAID). It is expected that the use of myAID can help improve patient, knowledge, quality of life, adherence to therapy and long-term outcomes and empower patients living with UC to play a role in their own treatment and health management.
The trial has finished recruiting and data collection with patients is ongoing.
Publications to date:
Kim AH, Girgis A, De Cruz P, Siegel CA, Karimi N, Ruban SO, Sechi AJ, Ng WSW, Andrews JM, Connor SJ. Development and Feasibility of a Web-Based Decision Aid for Patients With Ulcerative Colitis: Qualitative Pilot Study. J Med Internet Res.2021;23(2):e15946
'myAID was positively received by both patients and clinicians and considered
a feasible and an acceptable tool to facilitate shared decision making in UC
management.'
Kim AH, Girgis A, Karimi N, Sechi AJ, Descallar J, Andrews JM, Siegel CA, Connor SJ. A Web-Based Decision Aid (myAID) to Enhance Quality of Life, Empowerment, Decision Making, and Disease Control for Patients With Ulcerative Colitis: Protocol for a Cluster Randomized Controlled Trial. JMIR Res Protoc. 2020;9(7):e15994
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