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Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?

Katherine Tuite-Dalton, Rod Middleton Orcid Logo, Katie Tuite-Dalton, Elaine Baker, Andrea Stennett, Christo Albor, Klaus Schmierer

Frontiers in Neurology, Volume: 11

Swansea University Authors: Katherine Tuite-Dalton, Rod Middleton Orcid Logo

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DOI (Published version): 10.3389/fneur.2020.00464

Abstract

Technological innovation is transforming traditional clinical practice, enabling people with multiple sclerosis (pwMS) to contribute health care outcome data remotely between clinic visits. In both relapsing and progressive forms of multiple sclerosis (MS), patients may experience variable disabilit...

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Published in: Frontiers in Neurology
ISSN: 1664-2295
Published: Frontiers Media SA 2020
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URI: https://cronfa.swan.ac.uk/Record/cronfa61476
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In both relapsing and progressive forms of multiple sclerosis (MS), patients may experience variable disability accrual and symptoms throughout their disease course. The potential impact on the quality of life (QoL) in pwMS and their families and carers is profound. The introduction of treatment targets, such as NEDA (no evidence of disease activity) and NEPAD (no evidence of progression or active disease), that guide clinical decision-making, highlight the importance of utilizing sensitive instruments to measure and track disease activity and progression. However, the gold standard neurological disability tool&#x2014;expanded disability severity scale (EDSS)&#x2014;has universally recognized limitations. With strides made in our understanding of MS pathophysiology and DMT responsiveness, maintaining the status quo of measuring disability progression is no longer the recommended option. Outside the clinical trial setting, a comprehensive monitoring system has not been robustly established for pwMS. A 21st-century approach is required to integrate clinical, paraclinical, and patient-reported outcome (PRO) data from electronic health records, local databases, and patient registries. Patient and public involvement (PPI) is critical in the design and implementation of this workflow. To take full advantage of the potential of digital technology in the monitoring and care and QoL of pwMS will require iterative feedback between pwMS, health care professionals (HCPs), scientists, and digital experts.</abstract><type>Journal Article</type><journal>Frontiers in Neurology</journal><volume>11</volume><journalNumber/><paginationStart/><paginationEnd/><publisher>Frontiers Media SA</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>1664-2295</issnElectronic><keywords>multiple sclerosis, monitoring, 3TEST, patient engagement, technology</keywords><publishedDay>12</publishedDay><publishedMonth>6</publishedMonth><publishedYear>2020</publishedYear><publishedDate>2020-06-12</publishedDate><doi>10.3389/fneur.2020.00464</doi><url/><notes/><college>COLLEGE NANME</college><department>Health Data Science</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>HDAT</DepartmentCode><institution>Swansea University</institution><apcterm/><funders>KA-P was supported by the National Institute for Health Research North Thames Clinical Research Network. 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spelling 2022-10-21T10:00:44.7558958 v2 61476 2022-10-07 Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement? 2e25da269f03da81184357bb0ef8623d Katherine Tuite-Dalton Katherine Tuite-Dalton true false 005518f819ef1a2a13fdf438529bdfcd 0000-0002-2130-4420 Rod Middleton Rod Middleton true false 2022-10-07 HDAT Technological innovation is transforming traditional clinical practice, enabling people with multiple sclerosis (pwMS) to contribute health care outcome data remotely between clinic visits. In both relapsing and progressive forms of multiple sclerosis (MS), patients may experience variable disability accrual and symptoms throughout their disease course. The potential impact on the quality of life (QoL) in pwMS and their families and carers is profound. The introduction of treatment targets, such as NEDA (no evidence of disease activity) and NEPAD (no evidence of progression or active disease), that guide clinical decision-making, highlight the importance of utilizing sensitive instruments to measure and track disease activity and progression. However, the gold standard neurological disability tool—expanded disability severity scale (EDSS)—has universally recognized limitations. With strides made in our understanding of MS pathophysiology and DMT responsiveness, maintaining the status quo of measuring disability progression is no longer the recommended option. Outside the clinical trial setting, a comprehensive monitoring system has not been robustly established for pwMS. A 21st-century approach is required to integrate clinical, paraclinical, and patient-reported outcome (PRO) data from electronic health records, local databases, and patient registries. Patient and public involvement (PPI) is critical in the design and implementation of this workflow. To take full advantage of the potential of digital technology in the monitoring and care and QoL of pwMS will require iterative feedback between pwMS, health care professionals (HCPs), scientists, and digital experts. Journal Article Frontiers in Neurology 11 Frontiers Media SA 1664-2295 multiple sclerosis, monitoring, 3TEST, patient engagement, technology 12 6 2020 2020-06-12 10.3389/fneur.2020.00464 COLLEGE NANME Health Data Science COLLEGE CODE HDAT Swansea University KA-P was supported by the National Institute for Health Research North Thames Clinical Research Network. The UKMSR was funded by the Multiple Sclerosis Society of Great Britain & Northern Ireland. The initiation and early maintenance of the BartsMS Database were supported by non-promotional research grants from Novartis Pharmaceuticals UK Ltd. 2022-10-21T10:00:44.7558958 2022-10-07T11:54:59.2982609 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine Katherine Tuite-Dalton 1 Rod Middleton 0000-0002-2130-4420 2 Katie Tuite-Dalton 3 Elaine Baker 4 Andrea Stennett 5 Christo Albor 6 Klaus Schmierer 7 61476__25540__e72de12179e04191962ddd026a62d989.pdf 61476_VoR.pdf 2022-10-21T09:58:46.8420963 Output 384014 application/pdf Version of Record true © 2020 Allen-Philbey, Middleton, Tuite-Dalton, Baker, Stennett, Albor and Schmierer. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). true eng http://creativecommons.org/licenses/by/4.0/
title Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?
spellingShingle Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?
Katherine Tuite-Dalton
Rod Middleton
title_short Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?
title_full Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?
title_fullStr Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?
title_full_unstemmed Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?
title_sort Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?
author_id_str_mv 2e25da269f03da81184357bb0ef8623d
005518f819ef1a2a13fdf438529bdfcd
author_id_fullname_str_mv 2e25da269f03da81184357bb0ef8623d_***_Katherine Tuite-Dalton
005518f819ef1a2a13fdf438529bdfcd_***_Rod Middleton
author Katherine Tuite-Dalton
Rod Middleton
author2 Katherine Tuite-Dalton
Rod Middleton
Katie Tuite-Dalton
Elaine Baker
Andrea Stennett
Christo Albor
Klaus Schmierer
format Journal article
container_title Frontiers in Neurology
container_volume 11
publishDate 2020
institution Swansea University
issn 1664-2295
doi_str_mv 10.3389/fneur.2020.00464
publisher Frontiers Media SA
college_str Faculty of Medicine, Health and Life Sciences
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hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
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hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Medicine{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Medicine
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description Technological innovation is transforming traditional clinical practice, enabling people with multiple sclerosis (pwMS) to contribute health care outcome data remotely between clinic visits. In both relapsing and progressive forms of multiple sclerosis (MS), patients may experience variable disability accrual and symptoms throughout their disease course. The potential impact on the quality of life (QoL) in pwMS and their families and carers is profound. The introduction of treatment targets, such as NEDA (no evidence of disease activity) and NEPAD (no evidence of progression or active disease), that guide clinical decision-making, highlight the importance of utilizing sensitive instruments to measure and track disease activity and progression. However, the gold standard neurological disability tool—expanded disability severity scale (EDSS)—has universally recognized limitations. With strides made in our understanding of MS pathophysiology and DMT responsiveness, maintaining the status quo of measuring disability progression is no longer the recommended option. Outside the clinical trial setting, a comprehensive monitoring system has not been robustly established for pwMS. A 21st-century approach is required to integrate clinical, paraclinical, and patient-reported outcome (PRO) data from electronic health records, local databases, and patient registries. Patient and public involvement (PPI) is critical in the design and implementation of this workflow. To take full advantage of the potential of digital technology in the monitoring and care and QoL of pwMS will require iterative feedback between pwMS, health care professionals (HCPs), scientists, and digital experts.
published_date 2020-06-12T04:20:18Z
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