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How common is truly benign MS in a UK population?
OBJECTIVES: The prevalence and definition of benign multiple sclerosis (BMS) remain controversial. Most definitions are based on the Expanded Disability Status Scale (EDSS), not encompassing the wider impact of disease. The explanation for favourable outcomes remains unclear. We aim to provide a det...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6581074/ https://www.ncbi.nlm.nih.gov/pubmed/30177509 http://dx.doi.org/10.1136/jnnp-2018-318802 |
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author | Tallantyre, Emma Clare Major, Paula C Atherton, Michael J Davies, W Adam Joseph, Fady Tomassini, Valentina Pickersgill, Trevor P Harding, Katharine Elizabeth Willis, Mark Douglas Winter, Mia Robertson, Neil P |
author_facet | Tallantyre, Emma Clare Major, Paula C Atherton, Michael J Davies, W Adam Joseph, Fady Tomassini, Valentina Pickersgill, Trevor P Harding, Katharine Elizabeth Willis, Mark Douglas Winter, Mia Robertson, Neil P |
author_sort | Tallantyre, Emma Clare |
collection | PubMed |
description | OBJECTIVES: The prevalence and definition of benign multiple sclerosis (BMS) remain controversial. Most definitions are based on the Expanded Disability Status Scale (EDSS), not encompassing the wider impact of disease. The explanation for favourable outcomes remains unclear. We aim to provide a detailed characterisation of patients with low EDSS scores at long disease durations. METHODS: We screened a population-based registry containing 3062 people with MS to identify individuals with unlimited walking ability at disease durations >15 years. A representative cohort underwent detailed clinical assessment and classified as having BMS according to EDSS score <3, no significant fatigue, mood disturbance, cognitive impairment or disrupted employment, and had not received a disease-modifying therapy. We determined patient-reported perceptions of MS status and made comparisons with EDSS-based definitions. RESULTS: Of 1049 patients with disease duration of >15 years, 200 (19.1%) had most recent EDSS score <4.0. Detailed contemporary clinical assessment of a representative sample of 60 of these patients revealed 48 (80%) had an EDSS score of <4.0, 35 (58%) <3.0 and 16 (27%) <2.0. Only nine (15%) fulfilled our criteria for BMS; impaired cognition (57%) and effects on employment (52%) the most common causes for exclusion. Meanwhile, 33/60 (69%) patients considered their disease benign. Population frequency for BMS was estimated at 2.9% (95% CI 2.0 to 4.1). CONCLUSIONS: Comprehensive assessment reveals a small minority of people with MS who appear genuinely benign after 15 years. Study of such individuals may uncover insights about disease pathogenesis. However, discrepancy between patient perception and clinician perception of BMS undermines use of the term ‘benign’ in clinical settings. |
format | Online Article Text |
id | pubmed-6581074 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-65810742019-07-02 How common is truly benign MS in a UK population? Tallantyre, Emma Clare Major, Paula C Atherton, Michael J Davies, W Adam Joseph, Fady Tomassini, Valentina Pickersgill, Trevor P Harding, Katharine Elizabeth Willis, Mark Douglas Winter, Mia Robertson, Neil P J Neurol Neurosurg Psychiatry Multiple Sclerosis OBJECTIVES: The prevalence and definition of benign multiple sclerosis (BMS) remain controversial. Most definitions are based on the Expanded Disability Status Scale (EDSS), not encompassing the wider impact of disease. The explanation for favourable outcomes remains unclear. We aim to provide a detailed characterisation of patients with low EDSS scores at long disease durations. METHODS: We screened a population-based registry containing 3062 people with MS to identify individuals with unlimited walking ability at disease durations >15 years. A representative cohort underwent detailed clinical assessment and classified as having BMS according to EDSS score <3, no significant fatigue, mood disturbance, cognitive impairment or disrupted employment, and had not received a disease-modifying therapy. We determined patient-reported perceptions of MS status and made comparisons with EDSS-based definitions. RESULTS: Of 1049 patients with disease duration of >15 years, 200 (19.1%) had most recent EDSS score <4.0. Detailed contemporary clinical assessment of a representative sample of 60 of these patients revealed 48 (80%) had an EDSS score of <4.0, 35 (58%) <3.0 and 16 (27%) <2.0. Only nine (15%) fulfilled our criteria for BMS; impaired cognition (57%) and effects on employment (52%) the most common causes for exclusion. Meanwhile, 33/60 (69%) patients considered their disease benign. Population frequency for BMS was estimated at 2.9% (95% CI 2.0 to 4.1). CONCLUSIONS: Comprehensive assessment reveals a small minority of people with MS who appear genuinely benign after 15 years. Study of such individuals may uncover insights about disease pathogenesis. However, discrepancy between patient perception and clinician perception of BMS undermines use of the term ‘benign’ in clinical settings. BMJ Publishing Group 2019-05 2018-09-03 /pmc/articles/PMC6581074/ /pubmed/30177509 http://dx.doi.org/10.1136/jnnp-2018-318802 Text en © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0 |
spellingShingle | Multiple Sclerosis Tallantyre, Emma Clare Major, Paula C Atherton, Michael J Davies, W Adam Joseph, Fady Tomassini, Valentina Pickersgill, Trevor P Harding, Katharine Elizabeth Willis, Mark Douglas Winter, Mia Robertson, Neil P How common is truly benign MS in a UK population? |
title | How common is truly benign MS in a UK population? |
title_full | How common is truly benign MS in a UK population? |
title_fullStr | How common is truly benign MS in a UK population? |
title_full_unstemmed | How common is truly benign MS in a UK population? |
title_short | How common is truly benign MS in a UK population? |
title_sort | how common is truly benign ms in a uk population? |
topic | Multiple Sclerosis |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6581074/ https://www.ncbi.nlm.nih.gov/pubmed/30177509 http://dx.doi.org/10.1136/jnnp-2018-318802 |
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