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

Abstract

Background Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS) and is the main reason why people with MS stop working early. The MS Society in the United Kingdom funded a randomized controlled trial of FACETS —a face-to-face group-based fatigue management program for people with multiple sclerosis (pwMS)—developed by members of the research team. Given the favorable trial results and to help with implementation, the MS Society supported the design and printing of the FACETS manual and materials and the national delivery of FACETS training courses (designed by the research team) for health care professionals (HCPs). By 2015 more than 1500 pwMS had received the FACETS program, 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 Web-based model of service delivery. Objective The aim of this study was to gather views about a Web-based model of service delivery from HCPs who had delivered FACETS and from pwMS who had attended FACETS. Methods Telephone consultations were undertaken with FACETS-trained HCPs who had experience of delivering FACETS ( n=8 ). Three face-to-face consultation groups were held with pwMS who had attended the FACETS program: London (n=4), Liverpool (n=4), and Bristol (n=7). The interviews and consultation groups were digitally recorded and transcribed. A thematic analysis was undertaken to identify key themes. Toward the end of the study, a roundtable meeting was held to discuss outcomes from the consultation with representatives from the MS Society, HCPs, and pwMS. Results Key challenges and opportunities of designing and delivering an integrated Web-based version of FACETS and maintaining user engagement were identified across 7 themes (delivery, online delivery, design, group, engagement, interactivity, and HCP relationships). Particularly of interest were themes related to replicating the group dynamics and the lack of high-quality solutions that would support the FACETS’ weekly homework tasks and symptom monitoring and management. Conclusions A minimum viable Web-based version of FACETS was suggested as the best starting point for a phased implementation, enabling a solution that could then be added to over time. It was also proposed that a separate study should look to create a free stand-alone digital toolkit focusing on the homework elements of FACETS. This study has commenced with a first version of the toolkit in development involving pwMS throughout the design and build stages to ensure a user-centered solution.

The Role of Engagement in Teleneurorehabilitation: A Systematic Review

“…Ten studies compared patients with neurological disorders with healthy subjects or with other group of patients (69, 72, 74, 76-79, 82, 85, 86). Among the selected studies four studies were conducted in patients with Parkinson Disease (PD) (72,78,83,86), four in patients with stroke (69,71,73,74), and five studies were conducted in patients with multiple sclerosis (MS) (75,77,81,82,84). All the selected studies used engagement strategies in their telerehabilitation program, as well as engagement assessment measures.…”

“…All the selected studies used engagement strategies in their telerehabilitation program, as well as engagement assessment measures. Particularly, eight studies used interviews to obtain qualitative data of patient engagement (69,71,74,75,(82)(83)(84)(85), six studies used functional assessment scales (70,72,73,76,80,81), and three studies used paper or digital diary reports (77, 78,86).…”

“…(6) Out of the 18 analyzed studies, only one study did not assess adherence to the intervention (70). Among the other 17 studies, 11 studies used semi-structured or unstructured interviews to assess patients adherence to the telerehabilitation program (71,72,75,76,(78)(79)(80)(81)(82)(83)(84). Four studies used questionnaires (74,75,77,86), two studies used the assessment report collected from the mobile or tablet rehabilitation application (78,86), and one study used the online counseling feedback to assess patients adherence to the telerehabilitation program (85).…”

“…Ten studies presented an small sample size to represent the results obtained after the treatment period (69-73, 75, 80, 83-85). Five studies based their results on the analyses of interviews conducted to the patients without analyzing any other clinical measure for engagement assessment (71,75,(83)(84)(85). All the studies included in this review reported their allocation sample method and study design.…”

“…The study by D'hooghe et al aimed at fostering patients' self-energy management and physical activity, decreasing the level of fatigue after physical activity. Regarding patients with MS, a web-based model (FACETS: Fatigue: Applying Cognitive-behavioral and Energy effectiveness Techniques to life Style) of service delivery from healthcare providers was also tested in 15 patients with MS to improve patients' behavioral and cognitive dimension of engagement (84). Further, an online video-chat platform was used as a pilot test telehealth intervention, grounded in self-determination theory, to enhance satisfaction, motivation, physical activity, and quality of life in adults with spinal cord injury (SCI) (n = 11) (85).…”