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Do people with multiple sclerosis want to know their prognosis? A UK nationwide study

Do people with multiple sclerosis want to know their prognosis? A UK nationwide study
Do people with multiple sclerosis want to know their prognosis? A UK nationwide study
Background: multiple sclerosis (MS) has a varied and uncertain trajectory. The recent development of analytical processing tools that draw on large longitudinal patient databases facilitates personalised long-term prognosis estimates. This has the potential to improve both shared treatment decision-making and psychological adjustment. However, there is limited research on how people with MS feel about prognosis communication and forecasting. This study investigated the prognosis communication experiences and preferences of people with MS and explored whether clinical, demographic and psychological factors are associated with prognosis information preferences.

Methods: 3175 UK MS Register members (59% of those with active accounts) completed an online survey containing 17 questions about prognosis communication experiences, attitudes and preferences. Participants also completed validated questionnaires measuring coping strategies, tendencies to seek out (‘monitor’) or avoid (‘blunt’) information in threatening situations, and MS risk perceptions and reported their clinical and sociodemographic characteristics. Data already held on the MS Register about participants’ quality of life, anxiety and depression symptoms and MS impact were obtained and linked to the survey data.

Results: 53.1% of participants had never discussed long-term prognosis with healthcare professionals. 54.2% lacked clarity about their long-term prognosis. 76% had strong preferences for receiving long-term prognosis information. 92.8% were interested in using tools that generate personalised predictions. Most participants considered prognostication useful for decision-making. Participants were more receptive to receiving prognosis information at later time-points, versus at diagnosis. A comprehensive set of sociodemographic, clinical and psychological variables predicted only 7.9% variance in prognosis information preferences.

Conclusions: people with MS have an appetite for individualised long-term prognosis forecasting and their need for information is frequently unmet. Clinical studies deploying and evaluating interventions to support prognostication in MS are now needed. This study indicates suitable contexts and patient preferences for initial trials of long-term prognosis tools in clinical settings.
1932-6203
1-14
Dennison, Laura
15c399cb-9a81-4948-8906-21944c033c20
Brown, Martina
28735aef-658a-4120-853f-29e986c94fc4
Kirby, Sarah
9be57c1b-5ab7-4444-829e-d8e5dbe2370b
Galea, Ian
66209a2f-f7e6-4d63-afe4-e9299f156f0b
Dennison, Laura
15c399cb-9a81-4948-8906-21944c033c20
Brown, Martina
28735aef-658a-4120-853f-29e986c94fc4
Kirby, Sarah
9be57c1b-5ab7-4444-829e-d8e5dbe2370b
Galea, Ian
66209a2f-f7e6-4d63-afe4-e9299f156f0b

Dennison, Laura, Brown, Martina, Kirby, Sarah and Galea, Ian (2018) Do people with multiple sclerosis want to know their prognosis? A UK nationwide study. PLoS ONE, 13 (2), 1-14, [e0193407]. (doi:10.1371/journal.pone.0193407).

Record type: Article

Abstract

Background: multiple sclerosis (MS) has a varied and uncertain trajectory. The recent development of analytical processing tools that draw on large longitudinal patient databases facilitates personalised long-term prognosis estimates. This has the potential to improve both shared treatment decision-making and psychological adjustment. However, there is limited research on how people with MS feel about prognosis communication and forecasting. This study investigated the prognosis communication experiences and preferences of people with MS and explored whether clinical, demographic and psychological factors are associated with prognosis information preferences.

Methods: 3175 UK MS Register members (59% of those with active accounts) completed an online survey containing 17 questions about prognosis communication experiences, attitudes and preferences. Participants also completed validated questionnaires measuring coping strategies, tendencies to seek out (‘monitor’) or avoid (‘blunt’) information in threatening situations, and MS risk perceptions and reported their clinical and sociodemographic characteristics. Data already held on the MS Register about participants’ quality of life, anxiety and depression symptoms and MS impact were obtained and linked to the survey data.

Results: 53.1% of participants had never discussed long-term prognosis with healthcare professionals. 54.2% lacked clarity about their long-term prognosis. 76% had strong preferences for receiving long-term prognosis information. 92.8% were interested in using tools that generate personalised predictions. Most participants considered prognostication useful for decision-making. Participants were more receptive to receiving prognosis information at later time-points, versus at diagnosis. A comprehensive set of sociodemographic, clinical and psychological variables predicted only 7.9% variance in prognosis information preferences.

Conclusions: people with MS have an appetite for individualised long-term prognosis forecasting and their need for information is frequently unmet. Clinical studies deploying and evaluating interventions to support prognostication in MS are now needed. This study indicates suitable contexts and patient preferences for initial trials of long-term prognosis tools in clinical settings.

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More information

Accepted/In Press date: 14 February 2018
e-pub ahead of print date: 28 February 2018
Published date: 2018

Identifiers

Local EPrints ID: 418355
URI: http://eprints.soton.ac.uk/id/eprint/418355
ISSN: 1932-6203
PURE UUID: db278bc8-b3c3-41b5-9cde-852c89ba0cbd
ORCID for Laura Dennison: ORCID iD orcid.org/0000-0003-0122-6610
ORCID for Sarah Kirby: ORCID iD orcid.org/0000-0003-1759-1356
ORCID for Ian Galea: ORCID iD orcid.org/0000-0002-1268-5102

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Date deposited: 01 Mar 2018 17:31
Last modified: 22 Nov 2021 02:54

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Contributors

Author: Laura Dennison ORCID iD
Author: Martina Brown
Author: Sarah Kirby ORCID iD
Author: Ian Galea ORCID iD

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