Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple Sclerosis.

fatigue management lived experience multiple sclerosis personalized medicine uncertainty

Journal

Journal of personalized medicine
ISSN: 2075-4426
Titre abrégé: J Pers Med
Pays: Switzerland
ID NLM: 101602269

Informations de publication

Date de publication:
12 Aug 2021
Historique:
received: 21 05 2021
revised: 03 08 2021
accepted: 10 08 2021
entrez: 27 8 2021
pubmed: 28 8 2021
medline: 28 8 2021
Statut: epublish

Résumé

There is enormous variation in the manifestations of disease experienced by people with multiple sclerosis (PwMS). While this variation makes personalized medicine an attractive goal, there are many challenges to be overcome before this opportunity can be realized. Personalized medicine often focuses on targeted therapies and detailed monitoring, but we also need to recognize that there will be variation in acceptance of these approaches by different PwMS. In other words, deep personalization of medicine will encompass targeted therapy, precision monitoring, tailored to variation in personal attitudes to these transformations in health care. In order to meet the promise of personalized medicine for MS, understanding the experiences of PwMS is necessary both to aid in the uptake of personalized medicine, and to ensure that personalized approaches to monitoring disease and treatment provide a net benefit to PwMS rather than placing additional burdens and stressors on them. Here, we describe recent research that identified five experiential themes for PwMS, and then interpret these themes according to the foundations of personalized medicine to provide a road map for implementation of personalized medicine solutions for PwMS.

Identifiants

pubmed: 34442434
pii: jpm11080791
doi: 10.3390/jpm11080791
pmc: PMC8401762
pii:
doi:

Types de publication

Journal Article

Langues

eng

Subventions

Organisme : Australian National University
ID : Grand Challenge

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Auteurs

Adam Henschke (A)

Department of Philosophy, Faculty of Behavioural, Management, and Social Sciences, University of Twente, 7522 Enschede, The Netherlands.
Crawford School of Public Policy, College of Asia and Pacific, Australian National University, Canberra 2601, Australia.

Jane Desborough (J)

Department of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Anne Parkinson (A)

Department of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Crystal Brunoro (C)

Department of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Vanessa Fanning (V)

Department of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Christian Lueck (C)

Australian National University Medical School, College of Health and Medicine, Australian National University, Canberra 2601, Australia.
Department of Neurology, Canberra Health Services, Canberra 2605, Australia.

Nicola Brew-Sam (N)

Department of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Anne Brüstle (A)

John Curtin School of Medical Research, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Janet Drew (J)

Department of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Katrina Chisholm (K)

Department of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Mark Elisha (M)

Department of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Hanna Suominen (H)

School of Computing, College of Engineering and Computer Science, Australian National University, Canberra 2601, Australia.
Machine Learning Group, Data61, Commonwealth Scientific and Industrial Research Organisation, Marsfield 2122, Australia.
Department of Computing, Faculty of Technology, University of Turku, 20500 Turku, Finland.

Antonio Tricoli (A)

Research School of Chemistry, College of Science, Australian National University, Canberra 2601, Australia.

Christine Phillips (C)

Australian National University Medical School, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Matthew Cook (M)

John Curtin School of Medical Research, College of Health and Medicine, Australian National University, Canberra 2601, Australia.

Classifications MeSH