Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS), a neurological condition affecting the central nervous system. Fatigue can have a hugely negative impact on the lives of people with MS, restricting their day-to-day activities and stopping them from doing the things that really matter to them. Fatigue is the main reason why people with MS stop working early.
FACETS is a group-based face-to-face fatigue management programme for people with MS (pwMS). It was developed by members of the Bournemouth University Clinical Research Unit (BUCRU) in collaboration with the Dorset MS team at Poole Hospital. Results from a national randomised controlled trial of FACETS demonstrated improvements in fatigue severity and self-efficacy at four months in those who had attended the FACETS programme relative to those who continued with their usual care only. A year on from the beginning of the trial these improvements were sustained and there were additional improvements in quality of life emerging.
To date, around 200 health care professionals have been trained to deliver the FACETS programme and over 1,500 people with MS in the UK have received FACETS. However, FACETS is not currently available in all areas, people with mobility or cognitive impairments might find it difficult to attend group sessions and those working full-time or not keen on groups might find a digital delivery format more useful. For these reasons BUCRU worked with the MS Society on a funded consultation project to scope and map alternative digital models for the delivery of FACETS. Key challenges and opportunities for delivering a digitised version were identified in the consultation, including the current lack of high quality mobile apps supporting the “homework” elements of FACETS such as activity and thought diaries (Thomas et al. 2019).
Funding for the digital toolkit was provided through the Higher Education Innovation Fund at the end of 2017. To achieve the creation of the digital toolkit a multi-disciplinary project team with expertise in psychology and behaviour change, human computer interaction and business development and evaluation was assembled.
Many MS apps fail to meet the needs of pwMS or involve them in their development. By inviting pwMS to participate throughout the design, build and evaluation phases of the FACETS toolkit we hope to create something that is truly fit-for-purpose. Since the beginning of 2018, development on the toolkit (Fairbanks et al. 2018) has involved focus groups with pwMS (to elicit user requirements), card sorting tasks (to inform the navigation structure), paper design sketches, low and high-fidelity wireframe designs and, since October 2018, the production of regularly updated working prototypes that can be viewed on an Android phone for testing.
Since March this year we have been undertaking supervised usability testing incorporating think-aloud methods, the System Usability Scale (SUS) and semi-structured interviews (Pulman et al. 2019). We have also used video capture of participants’ faces/hands as they interact with the toolkit to give us insights into its ease of use. Unsupervised testing –where users are able to download a copy of the toolkit to their own phone, try it out in their daily lives and then provide online feedback via a questionnaire – is scheduled to start in September and will continue up until the final prototype is completed in January 2020.
Future possibilities for toolkit development include exploring the feasibility of integrating the toolkit with existing data streams like the UK MS Register (connecting data about FACETS attendance and from homework activities), incorporating Smart technology (such as voice-activated speakers and the ability to collect live biometric data via wearables) and the development, once Smart, of an Apple iOS version.
References
Fairbanks, B., Pulman, A., Dogan, H., Jiang, N., Pretty, K., Thomas, P. and Thomas, S., 2018. Creating a FACETS digital toolkit to promote quality of life of people with multiple sclerosis through Participatory Design. In: 2nd Workshop on Human Centred Design for Intelligent Environments (HCD4IE). The 32nd Human Computer Interaction Conference (British HCI’18) 3 July 2018 Belfast.
Pulman, A., Thomas, P., Jiang, N., Dogan, H., Pretty, K., Passmore, D., Fairbanks, B. and Thomas, S., 2019. Developing a FACETS digital toolkit. In: MS Frontiers 2019. URL: http://eprints.bournemouth.ac.uk/32492/
Thomas, S., Pulman, A., Thomas, P., Collard, S., Jiang, N., Dogan, H., Smith, A.D., Hourihan, S., Roberts, F., Kersten, P. and Pretty, K. Digitizing a Face-to-Face Group Fatigue Management Program: Exploring the Views of People With Multiple Sclerosis and Health Care Professionals Via Consultation Groups and Interviews. JMIR Formative Research. 2019;3(2):e10951. doi: 10.2196/10951.
