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

Sarah Thomas, Andy Pulman, Peter W. Thomas, Sarah Collard, Nan Jiang, Huseyin Dogan, Angela Davies Smith, Susan Hourihan, Fiona Roberts, Paula Kersten, Keith Pretty, Jessica K. Miller, Kirsty Stanley, Marie-Claire Gay

Research output: Contribution to journalArticleResearchpeer-review

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.
Original languageEnglish
Article numbere10951
Pages (from-to)1-16
JournalJMIR Formative Research
Volume21
Issue number5
DOIs
Publication statusPublished - 22 May 2019

Fingerprint

Multiple Sclerosis
Fatigue
Referral and Consultation
Interviews
Delivery of Health Care
Printing
Patient Care Team
Health Services Research
Telephone
Randomized Controlled Trials

Bibliographical note

© Sarah Thomas, Andy Pulman, Peter Thomas, Sarah Collard, Nan Jiang, Huseyin Dogan, Angela Davies Smith, Susan Hourihan, Fiona Roberts, Paula Kersten, Keith Pretty, Jessica K Miller, Kirsty Stanley, Marie-Claire Gay. Originally published in JMIR Formative Research (http://formative.jmir.org), 22.05.2019. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on http://formative.jmir.org, as well as this copyright and license information must be included.

Keywords

  • FACETS
  • Fatigue
  • Fatigue management
  • Mobile health
  • Multiple sclerosis
  • Telemedicine

Cite this

Thomas, Sarah ; Pulman, Andy ; Thomas, Peter W. ; Collard, Sarah ; Jiang, Nan ; Dogan, Huseyin ; Smith, Angela Davies ; Hourihan, Susan ; Roberts, Fiona ; Kersten, Paula ; Pretty, Keith ; Miller, Jessica K. ; Stanley, Kirsty ; Gay, Marie-Claire. / 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. In: JMIR Formative Research . 2019 ; Vol. 21, No. 5. pp. 1-16.
@article{7e9628d24f0942a2b5a38e60e3f5e56f,
title = "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.",
keywords = "FACETS, Fatigue, Fatigue management, Mobile health, Multiple sclerosis, Telemedicine",
author = "Sarah Thomas and Andy Pulman and Thomas, {Peter W.} and Sarah Collard and Nan Jiang and Huseyin Dogan and Smith, {Angela Davies} and Susan Hourihan and Fiona Roberts and Paula Kersten and Keith Pretty and Miller, {Jessica K.} and Kirsty Stanley and Marie-Claire Gay",
note = "{\circledC} Sarah Thomas, Andy Pulman, Peter Thomas, Sarah Collard, Nan Jiang, Huseyin Dogan, Angela Davies Smith, Susan Hourihan, Fiona Roberts, Paula Kersten, Keith Pretty, Jessica K Miller, Kirsty Stanley, Marie-Claire Gay. Originally published in JMIR Formative Research (http://formative.jmir.org), 22.05.2019. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on http://formative.jmir.org, as well as this copyright and license information must be included.",
year = "2019",
month = "5",
day = "22",
doi = "10.2196/10951",
language = "English",
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journal = "JMIR Formative Research",
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Thomas, S, Pulman, A, Thomas, PW, Collard, S, Jiang, N, Dogan, H, Smith, AD, Hourihan, S, Roberts, F, Kersten, P, Pretty, K, Miller, JK, Stanley, K & 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 , vol. 21, no. 5, e10951, pp. 1-16. https://doi.org/10.2196/10951

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. / Thomas, Sarah; Pulman, Andy; Thomas, Peter W.; Collard, Sarah; Jiang, Nan ; Dogan, Huseyin; Smith, Angela Davies ; Hourihan, Susan; Roberts, Fiona; Kersten, Paula; Pretty, Keith; Miller, Jessica K.; Stanley, Kirsty; Gay, Marie-Claire.

In: JMIR Formative Research , Vol. 21, No. 5, e10951, 22.05.2019, p. 1-16.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Digitizing a Face-to-Face Group Fatigue Management Program

T2 - 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 W.

AU - Collard, Sarah

AU - Jiang, Nan

AU - Dogan, Huseyin

AU - Smith, Angela Davies

AU - Hourihan, Susan

AU - Roberts, Fiona

AU - Kersten, Paula

AU - Pretty, Keith

AU - Miller, Jessica K.

AU - Stanley, Kirsty

AU - Gay, Marie-Claire

N1 - © Sarah Thomas, Andy Pulman, Peter Thomas, Sarah Collard, Nan Jiang, Huseyin Dogan, Angela Davies Smith, Susan Hourihan, Fiona Roberts, Paula Kersten, Keith Pretty, Jessica K Miller, Kirsty Stanley, Marie-Claire Gay. Originally published in JMIR Formative Research (http://formative.jmir.org), 22.05.2019. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on http://formative.jmir.org, as well as this copyright and license information must be included.

PY - 2019/5/22

Y1 - 2019/5/22

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.

AB - 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.

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KW - Mobile health

KW - Multiple sclerosis

KW - Telemedicine

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