JMIR Publications

ABSTRACT

Background:

Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS) - experienced by over 80 per cent of people with MS. FACETS is an evidence-based face-to-face, 6-session group fatigue management programme for people with MS. Homework tasks are an integral part of FACETS and are currently undertaken in a paper-based form. Feedback from a consultation undertaken with FACETS attendees and health care professionals with experience of delivering the FACETS programme suggested that being able to complete the homework tasks digitally would be desirable; potentially enhancing engagement and adherence and enabling on-the-go access to fit into busy lifestyles. Relative to other long-term conditions there are few apps specifically for MS and, of those that are available, many have been developed with little or no input from people with MS.

Objective:

The purpose of this mixed methods study was to create a digital toolkit comprising the homework tasks (e.g. activity diary, goal planner, thought diary) of the FACETS programme for people with MS, taking into account end users’ unique requirements throughout design, build, prototyping and testing stages.

Methods:

Phase 1 involved the elicitation of detailed user requirements for the toolkit via 2 focus groups with previous attendees of FACETS (n=6; n=3) and wireframing. Phase 2 involved supervised usability testing with people with MS (n=11) with iterative prototyping. The usability sessions involved going through test scenarios using the FACETS Toolkit on an Android test phone with video-capture and concurrent think-aloud followed by completion of the System Usability Scale (SUS) and a semi-structured interview that asked for feedback about design, content and functionality.

Results:

The mean (SD [95% CI] range) SUS score for the digital toolkit was 74% (16.8) [63.2 to 85.6] 37.5-95. This equates to an adjective rating of ‘Good’ and a ‘B’ grade (70-79th percentile range) on the Sauro–Lewis curved grading scale. 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, displaying personalised information and progress via a central dashboard) were addressed and implemented during the usability testing cycle.

Conclusions:

This work highlights the importance of the participation of people with MS across the entire development cycle, working to a human-centred design methodology to enable a considered and MS-centred solution to be developed. Continued horizon scanning for emergent technological enhancements will enable us to identify opportunities for further improvements to the FACETS Toolkit prior to launch. The toolkit supports self-monitoring and management of fatigue and has potential applicability to other long-term conditions where fatigue is a significant issue.