I have just returned from my summer holiday, where I had time to reflect and think about multiple sclerosis research, the practice of neurology and managing multiple sclerosis. We are at a crossroads where things are changing rapidly, mainly driven by developments in information technology. Over the next few weeks, I will cover these issues in more detail, in particular (1) the most exciting current MS research, (2) changes in the practice of neurology that will impact the diagnosis and management of MS, and (3) the unmet need in the management of MS.
Catching up with some journal reading this morning, I read a perspective in the New England Journal of Medicine on the management of patients with dementia (Harrison et al. Toward Gerineuropalliative Care for Patients with Dementia. N Engl J Med. 2023 Aug 31;389(9):775-778). I was particularly struck by the following paragraph:
“As things stand, Americans with dementia and their care partners face extensive care gaps and fragmentation, even if they are well-resourced and can access clinics associated with Alzheimer’s disease research centers. Specialty memory care clinics provide diagnosis and annual appointments focused on medical management; even when they are available, psychosocial supports are insufficient to address all the needs of patients. In interviews, persons with dementia and their care partners described their need for adaptive support in managing progressive changes in distressing behavioral symptoms, function, and social connections. Interviewees said they wanted prognostic information and anticipatory guidance specific to dementia to inform their treatment decisions, financial planning, home adaptations, and transitions between settings.”
This perspective could have been written about multiple sclerosis. The issues people with MS have regarding their long-term management are not too dissimilar to patients with Alzheimer’s or dementia. Yes, people with MS (pwMS) “want prognostic information and anticipatory guidance specific to MS to inform their treatment decisions, financial planning, home adaptations, and transitions between settings”. This paper is a call to arms for the holistic management of dementia. Using MS-Selfie as a platform, I have been calling for something similar for pwMS.
I know that most MS centres primarily focus on diagnosis and MS disease-modifying therapies and have too little time and resources to manage many of the symptoms of MS. MS-related symptomatic problems are numerous and often require additional input from allied healthcare professionals. This often leads to disjointed care.
One way of addressing fragmented care pwMS have to deal with is by giving them the knowledge and tools to self-manage their symptoms. However, self-management is easier said than done. Despite writing MS-Selfie Newsletters about many of the symptomatic problems pwMS suffer from, many readers and subscribers still ask questions I have previously covered. In other words, the dissemination of information is not sufficient. To address this, I plan to start an online MS-Selfie self-management course. However, this course will need to do more than disseminate information. Therefore, I am considering designing self-management flowcharts or algorithms that will allow you to do as much as possible before asking for help from an HCP. Would self-assessment and self-management flowcharts for MS-related symptoms be helpful?
Regarding MS, three core symptoms that tend to be poorly managed in clinical practice are insomnia, fatigue and cognitive problems. When these symptoms are systematically assessed, the assessments often cover almost all other MS-related symptoms, so I would want to focus on these problems first. Do you agree?
Before embarking on a large body of work to create an MS-Selfie clickthrough self-management algorithm for each of these symptoms, I would appreciate your input on whether or not you think it is worth it. Am I reinventing the wheel? Have you found other resources helpful in this area? If yes, please share them.
I would prioritise sleep. Poor sleep is an integrator of many of the symptomatic problems associated with MS. Sorting out MS-related sleep problems will catalyse the holistic management of MS. For example, you can only tackle MS-related fatigue and cognitive problems once you sleep well. Do you agree?
For background reading, I suggest my previous MS-Selfie Newsletter on sleep (‘Are you sleep-deprived? 18-Aug-2021).
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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your own healthcare professional, who will be able to help you.