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
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
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).
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.
Text
Kosch et al 2020
- Accepted Manuscript
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
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Date deposited: 01 Dec 2020 17:31
Last modified: 17 Mar 2024 02:57
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Contributors
Author:
Ricardo Kosch
Author:
Insa Schiffmann
Author:
Martin Daumer
Author:
Christian Lederer
Author:
Antonio Scalfari
Author:
Jutta Scheiderbauer
Author:
Anne Rahn
Author:
Christoph Heesen
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