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Long-term prognostic counselling in people with multiple sclerosis using an online analytical processing tool

Long-term prognostic counselling in people with multiple sclerosis using an online analytical processing tool
Long-term prognostic counselling in people with multiple sclerosis using an online analytical processing tool

Background: prognostic counselling is a sensitive issue in medicine and especially so in MS due to the highly heterogeneous disease course. However, people with MS (pwMS) seek prognostic information. The web-based ‘Evidence-Based Decision Support Tool in Multiple Sclerosis’ (EBDiMS) uses data of 717 patients from the London/Ontario cohort to calculate personalized long-term prognostic information.

Objective: the aim of this study was to investigate the feasibility and effect of long-term prognostic counselling in pwMS using EBDiMS.

Methods: ninety consecutive pwMS were provided with personalized estimations of expected time to reach Expanded Disability Status Scale (EDSS) scores of 6 and 8 and time to conversion to secondary-progressive MS. Participants gave estimates on their own putative prognosis and rated the tool’s acceptability on six-step Likert-type scales.

Results: participants rated EBDiMS as highly understandable, interesting and relevant for patient–physician encounters, coping and therapy decisions. Although it provoked a certain degree of worry in some participants, 95% would recommend using the tool. Participants’ own prognosis estimates did not change significantly following EBDiMS.

Conclusion: long-term prognostic counselling using an online tool has been shown to be feasible in a clinical setting. EBDiMS provides pwMS with relevant, easy-to-understand, long-term prognostic information without causing relevant anxiety.

Multiple sclerosis, long-term prognosis, online analytical processing tools, prognostic counselling, risk communication, treatment decisions
1352-4585
Kosch, Ricardo
b3cf5443-c0bc-4175-b04c-e9da484a7703
Schiffmann, Insa
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Daumer, Martin
67b40446-49b3-4c8a-b138-64dc435f5da6
Lederer, Christian
92b634aa-f80a-4ce2-8e59-818cdd8481db
Scalfari, Antonio
c277e471-9b39-4044-8249-e4e1e26f9bbe
Galea, Ian
66209a2f-f7e6-4d63-afe4-e9299f156f0b
Scheiderbauer, Jutta
da2f936d-4cd8-42a6-9a6b-8434aee221f0
Rahn, Anne
ac4f9d49-e29e-4083-8c93-2d70658cca9e
Heesen, Christoph
689dc041-c97d-4d1b-96d8-68efbe77c254
Kosch, Ricardo
b3cf5443-c0bc-4175-b04c-e9da484a7703
Schiffmann, Insa
7459142a-31e3-4496-898c-dcd8dba3796e
Daumer, Martin
67b40446-49b3-4c8a-b138-64dc435f5da6
Lederer, Christian
92b634aa-f80a-4ce2-8e59-818cdd8481db
Scalfari, Antonio
c277e471-9b39-4044-8249-e4e1e26f9bbe
Galea, Ian
66209a2f-f7e6-4d63-afe4-e9299f156f0b
Scheiderbauer, Jutta
da2f936d-4cd8-42a6-9a6b-8434aee221f0
Rahn, Anne
ac4f9d49-e29e-4083-8c93-2d70658cca9e
Heesen, Christoph
689dc041-c97d-4d1b-96d8-68efbe77c254

Kosch, Ricardo, Schiffmann, Insa, Daumer, Martin, Lederer, Christian, Scalfari, Antonio, Galea, Ian, Scheiderbauer, Jutta, Rahn, Anne and Heesen, Christoph (2020) Long-term prognostic counselling in people with multiple sclerosis using an online analytical processing tool. Multiple Sclerosis Journal. (doi:10.1177/1352458520964774).

Record type: Article

Abstract

Background: prognostic counselling is a sensitive issue in medicine and especially so in MS due to the highly heterogeneous disease course. However, people with MS (pwMS) seek prognostic information. The web-based ‘Evidence-Based Decision Support Tool in Multiple Sclerosis’ (EBDiMS) uses data of 717 patients from the London/Ontario cohort to calculate personalized long-term prognostic information.

Objective: the aim of this study was to investigate the feasibility and effect of long-term prognostic counselling in pwMS using EBDiMS.

Methods: ninety consecutive pwMS were provided with personalized estimations of expected time to reach Expanded Disability Status Scale (EDSS) scores of 6 and 8 and time to conversion to secondary-progressive MS. Participants gave estimates on their own putative prognosis and rated the tool’s acceptability on six-step Likert-type scales.

Results: participants rated EBDiMS as highly understandable, interesting and relevant for patient–physician encounters, coping and therapy decisions. Although it provoked a certain degree of worry in some participants, 95% would recommend using the tool. Participants’ own prognosis estimates did not change significantly following EBDiMS.

Conclusion: long-term prognostic counselling using an online tool has been shown to be feasible in a clinical setting. EBDiMS provides pwMS with relevant, easy-to-understand, long-term prognostic information without causing relevant anxiety.

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Kosch et al 2020 - Accepted Manuscript
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More information

Accepted/In Press date: 17 September 2020
e-pub ahead of print date: 26 October 2020
Keywords: Multiple sclerosis, long-term prognosis, online analytical processing tools, prognostic counselling, risk communication, treatment decisions

Identifiers

Local EPrints ID: 445288
URI: http://eprints.soton.ac.uk/id/eprint/445288
ISSN: 1352-4585
PURE UUID: 24614802-3eb4-4a3b-9d89-252d84e04cf1
ORCID for Ian Galea: ORCID iD orcid.org/0000-0002-1268-5102

Catalogue record

Date deposited: 01 Dec 2020 17:31
Last modified: 26 Nov 2021 02:47

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Contributors

Author: Ricardo Kosch
Author: Insa Schiffmann
Author: Martin Daumer
Author: Christian Lederer
Author: Antonio Scalfari
Author: Ian Galea ORCID iD
Author: Jutta Scheiderbauer
Author: Anne Rahn
Author: Christoph Heesen

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