Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study

被引:0
|
作者
Alison Thomson [1 ]
Rachel Horne [2 ]
Christine Chapman [2 ]
Trishna Bharadia [2 ]
Patrick Burke [2 ]
Elizabeth Colwell [2 ]
Mark Harrington [2 ]
Bonnie Boskovic [2 ]
Andrea Stennett [1 ]
David Baker [4 ]
Gavin Giovannoni [3 ]
Klaus Schmierer [1 ]
机构
[1] Queen Mary University of London,Centre for Preventive Neurology, Wolfson Institute of Population Health
[2] Queen Mary University of London,Patient Author, Barts MS Advisory Group
[3] Queen Mary University of London,The Blizard Institute, Centre for Neuroscience, Surgery and Trauma
[4] Barts Health NHS Trust,Clinical Board Medicine (Neuroscience)
[5] The Royal London Hospital,undefined
关键词
Multiple Sclerosis; Patient public involvement; Public engagement; Design; Clinical trials; Patient-centred; Co-creation;
D O I
10.1186/s40900-024-00586-y
中图分类号
学科分类号
摘要
Background: Solving complex research challenges requires innovative thinking and alternative approaches to traditional methods. One such example is the problem of arm and hand, or upper limb function in multiple sclerosis (MS), a neurological condition affecting approximately 2.9 million people worldwide and more than 150,000 in the United Kingdom. Historically, clinical trials and research have focused on mobility and walking ability. This excludes a large number of patients who are wheelchair users, limiting their quality of life and restricting access to possibly helpful medications. To address this issue, the ThinkHand campaign was launched in 2016, aiming to raise awareness about the importance of upper limb function in MS and develop alternative ways to measure, record, and account for hand and arm function changes.
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