MS Self-Management: What Does It Mean?

Gavin Giovannoni, MBBCh, PhD, FCP, FRCP, FRCPath

What does it mean when someone says that a person with multiple sclerosis (MS) needs to self-manage their disease? This is a broad question, so I decided to answer it in 3 different ways.

First, I asked ChatGPT, a large language model, for a response as a consensus statement from what is out there on the internet about this topic. I then countered this with my take on it from the perspective of MS-Selfie, an online suite of resources that I and colleagues have created to help people with MS (pwMS) and their families manage their MS. Finally, I describe a future hybrid model using a technology platform to help pwMS and their health care providers (HCPs) manage MS. The latter may be science fiction, but I have little doubt that it represents a future artificial intelligence–supported model for managing MS and other chronic diseases.

Part 1. ChatGPT

Below, you’ll find the response issued to me by ChatGPT when prompted about a unified message on what it means to self-manage MS:

When someone says a person with MS needs to self-manage their disease, it means that the person is actively involved in taking care of their health and managing the symptoms and challenges associated with MS. Self-management is a continuous process that requires the person to make informed decisions and take actions regarding their treatment and lifestyle. Some key aspects of MS self-management include the following:

1. Medication adherence. Taking prescribed medications regularly and correctly to manage symptoms and reduce the progression of the disease.
2. Monitoring symptoms. Keeping track of new or worsening symptoms and communicating them to HCPs.
3. Lifestyle modifications. Adopting a healthy lifestyle, including balanced nutrition, regular physical activity, adequate sleep, and stress management, can help manage symptoms and improve overall well-being.
4. Physical therapy and exercise. Engaging in physical therapy and exercises to maintain mobility, strength, and flexibility.
5. Education and staying informed. Learning about the disease, treatment options, and how to best manage symptoms through reliable sources and HCPs.
6. Emotional and mental health. Seeking support for mental and emotional health, possibly through counseling, support groups, or mindfulness practices.
7. Planning and pacing. Planning daily activities to manage fatigue and conserve energy to avoid overexertion.
8. Regular medical checkups. Attending regular appointments with HCPs to monitor disease progression and tailor treatments as needed.

Benefits of Self-Management

1. Improved quality of life. By managing symptoms effectively, individuals can often lead more active and fulfilling lives.
2. Empowerment. Taking an active role in managing their health can help individuals feel more in control.
3. Better health outcomes. Consistent self-management can potentially slow the progression of the disease and reduce the impact of symptoms.

Conclusion

Self-managing MS involves a holistic approach that includes medical treatment, lifestyle choices, and emotional support. It requires commitment and proactive engagement in one’s health and well-being.

Part 2. MS-Selfie

At the start of the COVID-19 pandemic, many MS services had to be rapidly reconfigured because of staff being redeployed to frontline medical services. For example, our MS services were largely reconfigured, with most provided remotely. During the pandemic’s early days, many pwMS had little access to current, up-to-date information on COVID-19 and how to manage their MS during the pandemic. In response to the unprecedented demand for information, I launched an online question-and-answer portal to answer questions daily. This has subsequently evolved into a self-management portal for pwMS. I named this MS-Selfie, which is short for MS self-management (FIGURE 1).

FIGURE 1. MS-Selfie

(click to enlarge)

MS-Selfie was initially configured to run on Google Sites, but in June 2021, it was transferred to Substack, an email-based platform. Since then, MS-Selfie has gradually evolved from a simple text-based newsletter or email to include podcasts and a curated MS-Selfie microsite. The primary objective of MS-Selfie is to give pwMS agency and confidence to make decisions about their MS care, or to at least ask the questions that will lead to better management of their MS.

The World Health Organization (WHO) has identified health literacy as an agent of change. The WHO has stated that “improving health literacy provides the foundation on which citizens can play an active role in improving their own health, engage successfully with community action for health, and push governments to meet their responsibilities in addressing health and health equity. Promoting health literacy in all but in particularly marginalized societies is crucial in accelerating progress in reducing health inequities and advancing broader social, economic, and environmental goals outlined in the 2030 Agenda for Sustainable Development.”

PwMS interact with many HCPs at different points in their MS journey. The diagnostic and initial treatment phase tends to take precedence over the rest of the MS journey. However, in reality, the ongoing day-to-day management of MS is much more critical in the life of someone with MS. The diagnostic phase of the disease should take weeks to months to complete. In comparison, MS lasts a lifetime.

As health care systems come under increasing pressure because of unsustainable funding models, demographic changes, and economic and political pressures, it is clear that people with chronic diseases need to do more to self-manage the impact of their disease(s). MS is no exception. So, ask not what the health care system or your HCP can do for you but what you can do to help yourself.

Many, if not most, pwMS are dissatisfied with their regular follow-up consultations. These follow-up consultations are short and tend to be superficial and incomplete. Brief, infrequent follow-up assessments are part of a broader problem of health care understaffing, an increasing number of pwMS (ie, both the incidence and prevalence of MS are increasing), and there is less time for patient contact because of the digitalization of medical practice. HCPs now have more administrative duties on electronic health records, which is time-consuming. Another aspect is that pwMS are more educated about having MS than they were in the past. Hence, pwMS expect more from their MS services, including more time with their MS neurologist and nurse specialist. Many patients go to their consultations with lists of questions that could be answered outside the consultation by subscribing to a resource such as MS-Selfie. In my experience, many patients know the answers to most of these questions but want the answers validated.

To manage your MS effectively, you must start with some basic expectations of your scheduled follow-up appointments. Preparing for your follow-up appointments is essential. Before you arrive at the clinic, you should have collected data and completed some form of a pro forma. A well-designed clinic pro forma could act as a crib or manifesto for the self-management of MS.

Most pwMS typically get 15 minutes for their annual appointment. However, as our treatment goals become more ambitious and we adopt a holistic approach to managing MS, more time is required for follow-up appointments. Most HCPs don’t have more time to offer. Therefore, we need a different health care model and a new way of managing chronic diseases such as MS.

The needs of pwMS change over time. Someone who develops MS starts their journey as being at risk of developing MS in the future. They then pass through asymptomatic, prodromal, and diagnostic phases. Once diagnosed with MS, they go through the stages of no or minimal disability, moderate disability, severe disability, and finally, they may end up at the terminal stages of having MS. As a Londoner, I have used the London Underground, or Tube, map to illustrate the MS journey (FIGURE 2). Please note that completing each stage of this journey is not inevitable. Many pwMS treated with high-efficacy disease-modifying therapies (DMTs) early on are prevented from becoming disabled. This is why I have included a dashed gray line on the map that leads to long-term remission, an MS cure, and normal ageing. This line remains under construction as we don’t have enough data to claim we can induce long-term remission and cure MS.

As your needs along the MS journey change, the annual follow-up appointments must reflect this. Some HCPs want to create specific care pathways to manage all the problems pwMS experience. However, care pathways can fragment MS care. For example, we may refer patients to see their local continence team or refer them to the spasticity clinic to consider a baclofen pump. A different team deals with these problems and justifies a specific, well-defined care pathway. Having separate care pathways for multiple problems often increases health care use and costs, which is why most MS health care teams attempt to deal with most MS-related problems themselves or initially, before more specialist input is required.

FIGURE 2. The Holistic Management of MS: A Londoner's View

The following is a typical list of things that must be done and questions that should be asked at the annual MS follow-up appointment.

Q: Is your MS active?

Have you had any relapses in the past 12 months? Has your annual MRI scan shown any new lesions? This is important, as it may make you eligible for starting, switching, or escalating your DMT. This section of the follow-up consultation can be difficult if the patient is getting worse (ie, has smouldering MS or intermittent symptoms that may or may not be because of a relapse).

Smouldering MS is common in pwMS if it is looked for with neurological stress tests and more sensitive outcome measures. However, neither of these are part of routine clinical practice. Because of a lack of evidence on how to manage smouldering MS, we don’t know whether escalating treatment (eg, switching to a higher-efficacy DMT in people with smouldering MS or progression independent of relapse activity) makes any difference. This is one of the reasons why clinicians don’t look for evidence of smouldering MS. This will change in the future once we have treatments targeting this disease.

Retrospective relapse assessments are also difficult (eg, somebody who had new symptoms since their last evaluation but didn’t bring it to the attention of their HCP at the time and their symptoms have now resolved). Part of what defines a relapse are changes on the neurological examination, and it is tough to identify a relapse if there aren’t any new clinical signs. This may not be important if the monitoring MRI shows new lesions, as this provides objective evidence of ongoing inflammatory MS disease activity. However, if the MRI shows no changes, an opportunity has been missed to document MS disease activity. Please be aware that approximately one-quarter of relapses, as defined clinically, are not associated with new lesions on MRI, so this issue is not trivial and occurs far too commonly in my clinical practice.

In the future, when regular blood neurofilament monitoring becomes routine, we may include biochemical evidence of relapse as part of the definition. This will be particularly powerful if we can do remote self-administered neurofilament measurements. I have predicted that biochemically defined relapses will become the norm.

Q: Are you stable or getting worse?

Because of time constraints, many MS centers are asking patients to self-monitor to get them to engage with their own MS and to save time. Our center expects patients to complete an online Expanded Disability Status Scale and to perform their own timed 25-ft walk, 9-hole peg test, and an online symbol digit modalities test (SDMT). Some patients do more than this; for example, they record their walking or running times and produce activity-monitoring data. In the future, this is likely to expand to include neurological stress tests and even home sleep monitoring using wearable technologies. Most pwMS have a sleep disorder, which contributes to poor brain health and exacerbates fatigue. Getting pwMS to sleep better will improve many other MS symptoms.

Q: Have all your pharmacovigilance and derisking activities been performed?

This involves ensuring your blood tests are fine, that you have had your annual vaccines, and screening for malignancies if necessary. Please note that the blood tests and procedures required are unique to each class of DMT. For example, if you are on natalizumab (Tysabri; Biogen), this will include monthly JC virus antibody index testing for 6 months and potentially monthly MRI monitoring for progressive multifocal leukoencephalopathy for 4 months.

Q: What medications are you currently taking?

Before a detailed symptom review, a review of your current medications is important. This can be easy if you remember to take a list with you. The medication review often forms the basis of the consultation. Not only is the current list helpful, but any changes from the last visit and a review of dietary supplements are also helpful. PwMS are increasingly using supplements on top of their prescribed medications to try to improve their outcome. It is remarkable how often supplements and alternative therapies hijack the discussion during the annual visit. This is unnecessary and can be done asynchronously using an online resource. It is remarkable how many pwMS attend follow-up appointments without an updated list of their medications.

Q: What are your plans for family planning?

Where appropriate, patients should be asked about their plans to start or extend their families. This is highly relevant, as this often interacts with DMTs and medications. This conversation may lead to a discussion about contraception. The family planning detour in itself can take many minutes to complete.

Q: Do you have any symptomatic problems?

This list of symptoms that must be addressed in this section of the follow-up depends on where you are on the MS journey. There is little point in asking about spasticity and falls if a patient is not disabled and runs marathons. I always start with the bladder and bowel function, proceed to sexual dysfunction, and then I ask about mobility (ie, walking distance, trips, and falls). Even if a patient is not falling, they may be at risk of falls and need to be referred to a falls prevention program and have their bone health assessed. The latter involves having a bone density or DEXA scan and taking vitamin D supplements (4000 IU per day). If you are osteopenic or osteoporotic, calcium and other supplements or medications may be required to strengthen your bones.

I then move onto fatigue, sleep, nocturnal spasms, restless legs, and pain. Next, I bring up the issue of mood and anxiety, which are common problems in pwMS. I always close this section with an open-ended question about other symptoms. On many occasions, I have to deal with symptoms that are not MS related (eg, joint pain from arthritis). It is remarkable how often non–MS-related symptoms are attributed to MS and are left to the MS team to sort out.

Q: How is your brain health?

I try to address all the issues I have mentioned in the past that can impact brain health, including exercise, diet, sleep, comorbidities, and other lifestyle factors, such as alcohol, smoking, and other substances of abuse and hormone replacement therapy. In an ideal world, we would love to be able to screen my patients for hypertension and the state of their metabolic health, but we don’t have time for this, and the management of these problems are generally done by the general practitioner or family doctor. Many pwMS who have comorbid hypertension or diabetes are not as engaged with managing their comorbidities as much as their MS. If you have hypertension or diabetes, you need to self-monitor your blood pressure and blood glucose and feedback the information to your general practitioner or HCP who helps you manage these problems.

Q: How is your social health, and do you have any modifiable social determinants of health?

I have recently started addressing modifiable social determinants of health. This includes questions about work, month finances, loneliness, and social isolation. We focus on social issues because we can now refer patients for help using social prescribing, or we can signpost people to community services.

Q: Do you have any cognitive issues?

I don’t specifically ask about cognition, because self-reporting cognitive problems is often unhelpful. PwMS who have cognitive problems are more likely to be depressed and anxious than have significant cognitive impairment. I prefer to pick up clues from the consultation that cognition is an issue and try to deal with the consequences as best I can. For example, an occupational health assessment may be the most appropriate action if someone is not coping at work. Now that we are monitoring cognition with the online SDMT, it is noteworthy that some people with relatively low scores still manage very well at work. Therefore, bringing up cognitive issues in high-functioning patients may not be necessary or appropriate.

Q: Are you coping with activities of daily living?

In patients who are disabled, it is essential to ask about activities of daily living. Are they managing their self-care? Can they wash and dress themselves? Brush their teeth? What is the state of their oral hygiene? Do they have caries or gum disease that needs attention? Who is looking after their feet? Can they cut their toenails? Do they need a referral to a podiatrist? Can they wash, dry, and brush their hair? Can they transfer themselves from the bed to the wheelchair and then to the toilet? If they are battling, do they have the necessary home adaptations? In almost every clinic, 1 or 2 of my patients must be seen by the community-based disability team because of these problems.

Q: Are your social care needs being addressed?

For some patients, we need to address other social issues. Is the care package sufficient? Are they managing to get everything done when their caregivers come in? Sometimes their caregivers are on such a tight schedule that they can’t even wait for their clients to complete a meal, which may result in a truncated feeding time. Although rare, I have had patients who became malnourished as a result.

Q: Are there any problems with bulbar or brainstem function?

Bulbar function refers to the functioning of structure innervated by nerves from the lower half of the brainstem (pons and medulla). In pwMS who are more disabled, I always ask about swallowing problems and choking episodes. This frequently prompts a referral for a speech and language assessment. Similarly, if their speech is affected, they may need help with a communication aid, which is done via the speech and language therapists.

Q: Have you completed an advanced directive?

In addition to the above, I often remind pwMS of the need to complete an advanced directive. An advanced directive (also known as a living will or personal directive) is a legal document that allows pwMS to outline their preferences for medical treatments and care if they become incapacitated and unable to communicate their wishes. This document specifies which medical procedures and treatments you would want or would not want, thereby guiding HCPs and your family in making decisions that align with your desires. Ideally, an advanced directive should be done early in your disease when you have insight and can discuss the issues with your partner and family. Waiting until you have advanced MS is too late for an advanced directive.

Q: Are you interested in clinical trials and/or do you have any other questions?

The annual MS review should allocate sufficient time so patients can ask questions. This usually prompts questions about MS research and clinical trials.

I am sure you can see that covering all the above issues in a short 15-minute consultation is difficult, so I limit the consultation to a few big-ticket items and refer patients to MS-Selfie and/or other online resources for information. I am a big fan of asynchronous consultations using email or a portal that automates some of the above. This is why pwMS must be more proactive about managing their own MS and general health. It is important to manage your MS holistically. To achieve this, I suggest adopting the principle of marginal gains as a treatment philosophy. This philosophy is based on managing all the small things that can improve MS outcomes and then improving it. By improving everything by a small amount, you will get a significant increase when you put them all together. I believe that if we shift our focus from the now to what happens to you in 20, 30, or 40 years’ time, the management of MS will change dramatically. To achieve this, we can’t simply treat MS-specific issues, but we need to focus on other factors affecting brain, metabolic, and social health.

Part 3. The Future: MS-Connect

I don’t know how MS will be managed in the future, but we clearly need something different than the current model. The following narrative is my attempt to predict a future where technology is embedded in the MS care pathway. Please note that the short story below is fictional and MS-Connect does not exist as a physical product.

My name is Susan. I am 36 years old and have had MS for 6 years. I am fuming; I found out that Naomi, my younger sister who also has MS, is regularly communicating with her MS team via a new web and smartphone application called MS-Connect. She has been using the app to manage her MS for several months. My neurologist and MS nurse have never heard of MS-Connect.

Why don’t people and HCPs specializing in MS share best practices?

MS-Connect is a beautifully designed and easy-to-use smartphone application that also can be accessed via web browser. To my horror, none of the HCPs from my MS center are registered on the app. Like other apps, MS-Connect allowed me to register with my Google profile and asked for my permission to use data from my MS diary, activity app, and sleep and diet apps. It only took me 15 minutes to complete my MS profile, which included the usual questions of when I first developed symptoms and about my diagnosis and MS treatments. It asked me whether I wanted to complete my relapse history, but I simply flagged the app to remind me later.

I quickly completed a short list of questions about the remainder of my medical history and listed all my current medications. The app then asked me whether I minded completing a baseline assessment to stage my MS. I had to complete a short online EDSS questionnaire, quality-of-life questionnaire, and then had the option of activating a suite of apps from the Floodlight MS portfolio of neurological applications. These apps are great fun and assess multiple aspects of my nervous system, including my hand function, balance, walking speed, bladder, bowel and sexual function, and cognition. I found the Floodlight cognition app very hard to complete, but at least it will allow me to monitor the impact of MS on my memory over the next few years.

After completing these outcome measures, MS-Connect presented me with a list of problems and asked me whether these problems were correct and whether I wanted to add any others to the list. My current list includes fatigue, urinary problems, constipation, anxiety, and potential problems relating to ocrelizumab, my current DMT.

MS-Connect is amazing; the list was spot on, and it asked me whether it was OK to receive notifications about these problems in the future. After saying yes, MS-Connect asked me whether there were other topics I would be interested in hearing about. I ticked the box in relation to lifestyle and wellness, comorbidities, and new research findings.

Astonishingly, over the next week, I received several notifications to complete my Floodlight tasks and a few self-management notifications about fatigue and bladder management. I had no idea that caffeine consumption can exacerbate bladder problems. Since cutting out caffeine, my urgency has definitely improved. Thank you, MS-Connect.

The real surprise was when MS-Connect asked me whether I had my rebaseline MRI scan after starting ocrelizumab. I had no idea about rebaselining, but at least I now understand the logic behind why it is needed. When I asked my MS nurse about the MRI, she stated that I didn’t need one because ocrelizumab is a high-efficacy DMT and my neurologist doesn’t monitor MS with MRI. Apparently my doctor believes clinical monitoring is sufficient to manage MS, so we’re going to have a very interesting conversation during our next face-to-face meeting.

MS-Connect also asked me what my latest MRI results were. Embarrassingly, I had no idea, but there is a wonderful feature that links to this Interrogate Your Brain (IYB) website, run by BrainDynamics, which allows you to upload your own MRI and receive a standardized MRI analysis. I have already contacted the radiology department at my hospital to get all my MRI scans so I can upload them to the IYB’s analysis portal. I want to know how much brain volume I have lost compared with people of my age who don’t have MS.

Today, I received a notification about herpes zoster, or shingles. I had no idea it is a potential adverse effect of ocrelizumab. MS-Connect advise me on what to look for in terms of the early symptoms of shingles and that I would need to see my doctor as soon as possible if I thought I had shingles so as to get a course of a prescribed antiviral therapy. Thank you again, MS-Connect.

The amount of information in MS-Connect is amazing. For example, I was browsing a section on MS education and read about vitamin D. I had no idea that the dose I have been taking is probably too low and needs to be increased.

The one disappointing feature was the one linking me to my MS team. When I searched for them in the HCP directory, they were not there. This means that they won’t be able to monitor me via MS-Connect or send me notifications about my upcoming appointments and results. Naomi gets a reminder the day before her infusion and often gets a notification on the day of her infusion (eg, to come 20 minutes later as her infusion bay is running late). For an NHS service, MS-Connect is simply brilliant.

A very illuminating feature of MS-Connect was the section on quality standards, which had an international league table of how MS centers are performing relative to each other. I learned that MS should ideally be diagnosed within 4 weeks of being referred to a neurologist. It took my neurologist more than 7 months to give me a diagnosis. I am particularly impressed with some of the large US clinics that seem to be able to make a diagnosis of MS within days.

What I like most about MS-Connect has been the social aspects. I have been able to link up with my sister and 3 of her friends who also have MS in a chat room. All she did was send me an email from the app, which allowed us to connect as a group within the app. Naomi met her new friends with MS when she came up for her monthly natalizumab infusions. The 5 of us chat regularly and share MS experiences in private. The social feature has also allowed me to share my Floodlight data and activity monitoring with my sister. We are now competing with each other to see who can do the most steps in a month and who can squash the most tomatoes in 1 minute in the Floodlight hand function app. There is nothing like a bit of competition to motivate you to do something.

It is clear that whoever designed and made MS-Connect does not want to reinvent the wheel. In the section for other resources, there are links to other online resources, and MS-Connect allows you to import your data from several other very useful MS applications. I was able to directly import my data from SymTrac and Cleo.

I have only been using MS-Connect for 6 weeks; in that time, I have learned so much about MS and how to self-manage my condition. I feel empowered to ask the right questions and get the most out of the time I have with my MS nurse and neurologist. My big task is to now get them to sign up to MS-Connect and use it to help me and other pwMS.

Conclusion

When I think about the future of MS management, the question I have is: How do we truly democratize knowledge, breakdown barriers between HCPs and pwMS, empower pwMS to ask the right questions, and focus on what really matters in the management of MS (ie, improved outcomes, better quality of life, reduced health care costs, greater efficiency, and equality of access)?

There is currently a massive investment into health care from the technology companies, both from the tech giants and new start-ups. They are all betting on a future where technology disrupts the current Victorian model of medicine and health care, which is configured around HCPs based in large, difficult-to-access institutions. One of the biggest challenges we face in the management of MS is the timely transfer of information in a format that is easy to understand. Applications such as the hypothetical MS-Connect above is just 1 potential solution to this problem. My overriding message to pwMS is that you must engage with managing your own MS. If you don’t, you will be left behind.

Resources

MS-Selfie Newsletters and Podcasts

MS-Selfie Microsite

ClinicSpeak

Disclosures: In the past 2 years, Professor Gavin Giovannoni has received compensation for serving as a consultant or speaker or research support from Astoria Biologica, Inc; Aurinia Pharmaceuticals Inc; Biogen Inc; Bristol Myers Squibb/Celgene Corporation; GSK; Janssen/Johnson & Johnson; Japan Tobacco Inc; Merck KGaA/EMD Serono; Moderna, Inc; Novartis; Sandoz; Sanofi; Roche/Genentech; Vir Biotechnology, Inc; and Viracta Therapeutics, Inc.