Accepted for/Published in: JMIR Formative Research
Date Submitted: Apr 9, 2020
Open Peer Review Period: Apr 14, 2020 - Jun 12, 2020
Date Accepted: Sep 6, 2021
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Creating a digital toolkit to reduce fatigue and promote quality of life in multiple sclerosis: mixed methods
ABSTRACT
Background:
Fatigue is one of the most common and debilitating symptoms of Multiple Sclerosis - experienced by over 80 per cent of people with MS (pwMS). By 2015 more than 1,500 pwMS had received the FACETS programme - a face-to-face group-based fatigue management programme for pwMS - but it is not available in all areas and a face-to-face format may not be suitable for or appeal to everyone. For these reasons, the MS Society funded a consultation to explore an alternative online model of service delivery. During the consultation it became apparent that there were no high quality free apps that would support digital completion of the FACETS homework tasks. A key recommendation was to initiate a separate project to create a stand-alone digital toolkit focusing on the homework elements of the FACETS programme.
Objective:
The purpose of this mixed methods study was to create a digital toolkit comprising the homework tasks (e.g. activity diary, goal planner and thought diary) of the FACETS programme for pwMS. Particular consideration was given to the unique requirements of people with MS when designing, building and prototyping the solution.
Methods:
Phase 1 involved the elicitation of user requirements and wireframing. Phase 2 involved several iterations of prototyping via detailed supervised usability testing sessions with service users (n=11). The sessions included going through test scenarios with video-capture and concurrent think-aloud, semi-structured interviews and completion of the System Usability Scale.
Results:
A number of usability and design issues (such as simplifying overall screen flow to better meet users’ needs) and suggestions for improvements (such as utilising location-based services, documenting accessed sections via tracking, displaying personalised information and progress via a central dashboard) were addressed and implemented.
Conclusions:
The ongoing participation of people with MS in the development cycle - working to a human-centred design methodology - enabled a considered and MS-centred solution. In the longer term, the toolkit offers possibilities for longitudinal symptom/self-monitoring and data sharing, greater integration of self-management strategies into daily life and has potential applicability to other long-term conditions.
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