Key Summary Points
A panel discussed: The impact of cognitive impairment on the treatment and daily lives of people living with multiple sclerosis (MS). |
A panel discussed: The importance of including cognitive impairment as a key priority in MS care and in future clinical trials. |
A panel discussed: The importance of open communication between healthcare professionals and people living with MS about how cognitive symptoms affect daily life and concerns that people living with MS may have about this. |
A panel discussed: The inclusion of routine cognition screening and monitoring in the clinic. |
A panel discussed: The implementation of cognition-protective practices, e.g. cognitive rehabilitation, maintaining a ‘brain-healthy’ lifestyle. |
Introduction
This is a summary of an original published article entitled ‘What is the true impact of cognitive impairment for people living with multiple sclerosis? A commentary of symposium discussions at the 2020 European Charcot Foundation’ [1].
-
Multiple sclerosis (MS) is a progressive disease which causes physical and cognitive symptoms.
-
Despite cognitive symptoms affecting up to 70% of people living with MS, treatment and research are skewed towards physical symptoms. This is partly because treatments for specific physical symptoms are readily available, whereas this is not the case for cognitive symptoms.
-
Multiple Sclerosis in the 21st Century (MS21) is an international committee of MS specialist healthcare professionals (HCPs) and patient experts dedicated to voicing the experiences and priorities of people living with MS and improving shared treatment decision-making.
-
In a discussion held by MS21 at the 2018 European Charcot Foundation (ECF) meeting, ‘invisible’ symptoms, including cognitive symptoms, were ranked by people living with MS among their greatest unmet needs.
-
At the 2020 ECF meeting, an MS21 panel consisting of a patient expert living with MS, a neuropsychologist and a neurologist (both specialising in MS) discussed the impact of cognitive impairment on the daily lives of people living with MS, and the importance of approaching this as a priority.
Anzeige
Main Findings
Addressing of Cognitive Symptoms by HCPs
-
The panel believed that HCPs may not always discuss cognitive symptoms with people living with MS, or carry out routine cognition screening:oHCPs may hesitate to initiate discussions about cognitive impairment since they do not have a medical treatment targeting it, and may feel like they cannot offer much support.oThe panel recommend HCPs incorporate routine cognition screening and monitoring as part of their MS care strategy.
-
People living with MS may not know that cognitive impairment is a symptom of their condition, so may not mention it to their HCPs.
-
The feeling of shame and social taboo that is often attached to cognitive symptoms can discourage people living with MS from talking about them.
Impact on Relationships
-
Cognitive symptoms can affect the social lives and relationships of people living with MS, and make it harder to understand social situations or other people’s emotions, as well as making it difficult to get involved in social activities.
-
People living with MS who have cognitive symptoms report feelings of social isolation and frustration.
Impact on Employment
-
It can be difficult for employers to see these ‘invisible’ symptoms as a disability or understand how employees living with MS might be affected. Similarly, employees experiencing these symptoms may not realise that their work difficulties are attributable to their MS.
-
People living with MS may benefit from HCPs helping them understand the possibility of future employment difficulties, and advising them on practical ways to manage the effects of their cognitive symptoms on their work (e.g. a detailed calendar use to compensate for memory difficulties).
-
HCPs can refer people living with MS to relevant support services that help with employment difficulties, including vocational counsellors.
Impact on Shared Decision-Making
-
Cognitive symptoms can affect the ability to 'take in' information, making it harder for people living with MS to participate in shared treatment decision-making.
-
Decision aids (materials designed to help patients understand specific information about a medical treatment) could be used to support people living with MS whose cognitive symptoms affect their ability to actively participate in their care.
Anzeige
Management of Cognitive Symptoms
-
HCPs can help people living with MS to protect their cognition and reduce symptom progression:oRecommend a ‘brain-healthy’ lifestyle, e.g. hobbies, physical activity, brain-training activitiesoReferral to ‘cognitive rehabilitation’ programmes designed to prevent development of cognitive symptoms and reduce symptom progressionoReferral to compensatory strategy training programmes, designed to teach ways to reduce the effects of cognitive symptoms on daily life, and therefore on quality of life
Conclusions
-
Raising awareness about cognitive symptoms will help people living with MS and HCPs to openly talk about them during healthcare consultations, which is important for managing the impact of these symptoms on daily life.
-
There is a need for more education for HCPs and people living with MS about cognitive symptoms, how these can affect quality of life, and ways to manage these symptoms to protect cognition.
-
Future clinical trials for MS treatments should include cognition outcomes as key endpoints.
Acknowledgements
The MS in the 21st Century initiative is financially supported by the healthcare business of Merck KGaA, Darmstadt, Germany.
Medical Writing and/or Editorial Assistance.
Search result sorting and medical writing assistance was provided by Selma Rayon and Sharon Pickett, Lumanity. Secretariat support and editorial input were provided by Lumanity, and funded by the healthcare business of Merck KGaA, Darmstadt, Germany.
Declarations
Conflict of Interest
Please see original article for full author disclosures.
Ethical Approval
This article is based on previously conducted studies and does not contain any new studies with human participants or animals performed by any of the authors.
Open Access This article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/.