ECTRIMS eLearning

Brain atrophy in multiple sclerosis: how patients understand the role of brain atrophy in the management of their MS
Author(s): ,
A. Montague
Affiliations:
Multiple Sclerosis Association of America, Cherry Hill, NJ
R. Bakshi
Affiliations:
Neurology, Harvard Medical School, Boston, MA, United States
ECTRIMS Learn. Montague A. 10/10/18; 229335; EP1497
Amanda Montague
Amanda Montague
Contributions
Abstract

Abstract: EP1497

Type: Poster Sessions

Abstract Category: Pathology and pathogenesis of MS - Neurodegeneration

Introduction: Brain atrophy is increasingly being used as an outcome measure in MS clinical trials and is strongly correlated with the development of disability and neuropsychological impairment in patients. Unfortunately, many MS patients generally do not have a clear understanding of all of the factors that can affect the path or progression of their disease, and this is particularly true as it relates to brain atrophy.
Objectives and Methods: The Multiple Sclerosis Association of America disseminated a survey to assess MS patients' understanding of the concept of brain atrophy and determine how this issue was being discussed between patients and their healthcare professionals. 1,337 MS patients completed the survey, with a majority of respondents reporting that they were currently using a FDA approved MS disease-modifying therapy and primarily receiving their care at a MS comprehensive center with a team of MS specialists.
Results: Respondents most associated brain atrophy with the loss of cognitive function (43%) and as a sign of disease progression (38%). While respondents ranked preventing physical disability progression as most important in the management of their MS (45%), maintaining cognitive function came in as the second most important consideration in the management of their MS (27%).
MS-related cognitive loss was shown to be an area of high concern for MS patients and to have a great impact on patients' quality of life. 78% of respondents reported being either very or extremely concerned about MS-related cognitive loss, and 29% of respondents reported that MS-related cognitive issues had made a significant impact on their quality of life (32%: some impact on QoL; 22.9%: minor impact on QoL). While these issues were clearly of high concern to MS patients, only 20% reported being either moderately or very satisfied with the amount of information available to them on how to prevent brain atrophy.
The findings also suggest that the issue of brain atrophy is not often discussed between patients and their healthcare professionals, with 62.7% of respondents reporting that they have never talked with any member of their medical team about brain atrophy.
Conclusions: Overall, the data suggests that there is a real need and an opportunity to better educate MS patients on the role that brain atrophy plays in disease progression. Implications of the findings and recommendations for future research on this topic will be presented.
Disclosure: Funding was provided for this initiative by Celgene.
Dr. Bakshi has received consulting fees from Bayer, EMD Serono, Genentech, Guerbet, Sanofi-Genzyme, and Shire and research support from EMD Serono and Sanofi-Genzyme.
Amanda Montague: nothing to disclose

Abstract: EP1497

Type: Poster Sessions

Abstract Category: Pathology and pathogenesis of MS - Neurodegeneration

Introduction: Brain atrophy is increasingly being used as an outcome measure in MS clinical trials and is strongly correlated with the development of disability and neuropsychological impairment in patients. Unfortunately, many MS patients generally do not have a clear understanding of all of the factors that can affect the path or progression of their disease, and this is particularly true as it relates to brain atrophy.
Objectives and Methods: The Multiple Sclerosis Association of America disseminated a survey to assess MS patients' understanding of the concept of brain atrophy and determine how this issue was being discussed between patients and their healthcare professionals. 1,337 MS patients completed the survey, with a majority of respondents reporting that they were currently using a FDA approved MS disease-modifying therapy and primarily receiving their care at a MS comprehensive center with a team of MS specialists.
Results: Respondents most associated brain atrophy with the loss of cognitive function (43%) and as a sign of disease progression (38%). While respondents ranked preventing physical disability progression as most important in the management of their MS (45%), maintaining cognitive function came in as the second most important consideration in the management of their MS (27%).
MS-related cognitive loss was shown to be an area of high concern for MS patients and to have a great impact on patients' quality of life. 78% of respondents reported being either very or extremely concerned about MS-related cognitive loss, and 29% of respondents reported that MS-related cognitive issues had made a significant impact on their quality of life (32%: some impact on QoL; 22.9%: minor impact on QoL). While these issues were clearly of high concern to MS patients, only 20% reported being either moderately or very satisfied with the amount of information available to them on how to prevent brain atrophy.
The findings also suggest that the issue of brain atrophy is not often discussed between patients and their healthcare professionals, with 62.7% of respondents reporting that they have never talked with any member of their medical team about brain atrophy.
Conclusions: Overall, the data suggests that there is a real need and an opportunity to better educate MS patients on the role that brain atrophy plays in disease progression. Implications of the findings and recommendations for future research on this topic will be presented.
Disclosure: Funding was provided for this initiative by Celgene.
Dr. Bakshi has received consulting fees from Bayer, EMD Serono, Genentech, Guerbet, Sanofi-Genzyme, and Shire and research support from EMD Serono and Sanofi-Genzyme.
Amanda Montague: nothing to disclose

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