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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 Form Res 2019; 3(2):e10951JF

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.

Authors+Show Affiliations

Bournemouth University Clinical Research Unit, Faculty of Health & Social Sciences, Bournemouth University, Bournemouth, United Kingdom.Bournemouth University Clinical Research Unit, Faculty of Health & Social Sciences, Bournemouth University, Bournemouth, United Kingdom.Bournemouth University Clinical Research Unit, Faculty of Health & Social Sciences, Bournemouth University, Bournemouth, United Kingdom.Bournemouth University Clinical Research Unit, Faculty of Health & Social Sciences, Bournemouth University, Bournemouth, United Kingdom.Faculty of Science & Technology, Department of Computing and Informatics, Bournemouth University, Bournemouth, United Kingdom.Faculty of Science & Technology, Department of Computing and Informatics, Bournemouth University, Bournemouth, United Kingdom.Bristol and Avon Multiple Sclerosis Service, North Bristol National Health Service Trust, Bristol, United Kingdom.Therapy and Rehabilitation Service, National Hospital for Neurology and Neurosurgery, University College London Hospitals, London, United Kingdom.Long Term Conditions Team, The Walton Centre National Health Service Trust, Liverpool, United Kingdom.School of Health Sciences, University of Brighton, Brighton, United Kingdom.Faculty of Science & Technology, Department of Computing and Informatics, Bournemouth University, Bournemouth, United Kingdom.Department of Sociology, University of Cambridge, Cambridge, United Kingdom.Dorset Multiple Sclerosis Service, Poole Hospital National Health Service Foundation Trust, Poole, United Kingdom.Paris Nanterre University, Paris, France.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31120021

Citation

Thomas, Sarah, et al. "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, vol. 3, no. 2, 2019, pp. e10951.
Thomas S, Pulman A, Thomas P, et al. 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 Form Res. 2019;3(2):e10951.
Thomas, S., Pulman, A., Thomas, P., Collard, S., Jiang, N., Dogan, H., ... Gay, M. C. (2019). 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, 3(2), pp. e10951. doi:10.2196/10951.
Thomas S, et al. 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 Form Res. 2019 May 22;3(2):e10951. PubMed PMID: 31120021.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - 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. AU - Thomas,Sarah, AU - Pulman,Andy, AU - Thomas,Peter, AU - Collard,Sarah, AU - Jiang,Nan, AU - Dogan,Huseyin, AU - Davies Smith,Angela, AU - Hourihan,Susan, AU - Roberts,Fiona, AU - Kersten,Paula, AU - Pretty,Keith, AU - Miller,Jessica K, AU - Stanley,Kirsty, AU - Gay,Marie-Claire, Y1 - 2019/05/22/ PY - 2018/12/18/received PY - 2019/03/04/accepted PY - 2019/03/01/revised PY - 2019/5/24/entrez PY - 2019/5/24/pubmed PY - 2019/5/24/medline KW - FACETS KW - fatigue KW - fatigue management KW - mobile health KW - multiple sclerosis KW - telemedicine SP - e10951 EP - e10951 JF - JMIR formative research JO - JMIR Form Res VL - 3 IS - 2 N2 - 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. SN - 2561-326X UR - https://www.unboundmedicine.com/medline/citation/31120021/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 L2 - http://formative.jmir.org/2019/2/e10951/ DB - PRIME DP - Unbound Medicine ER -