#ThinkSocial

no patient should be left behind

As America burns and the #BlackLivesMatter campaign goes global and spreads to the UK people of colour have been asking white people to say something. The quote Megan Markle “….. the only wrong thing to say is to say nothing”. At the same time, my eldest daughter is adamant that keyboard activism is wrong; “it easy to type and post something to social media”, she says “but it much is harder to something proactive and sincere”. As a secondary school teacher in a state comprehensive school in South London where a lot of her students have social problems and come from a BAME (black, Asian and minority ethnic) background, she has the moral high ground.

This discussion reminds me of a stinging criticism we at Barts-MS had from a person who was then working in a very senior position for one of the MS charities in the UK. She said that Barts-MS pandered to the rich, white, educated, middle-class person with MS, who came to our centre to get what they wanted and that we were neglecting our local population of patients who were much more needy. She claimed we had an unconscious bias against BAME (black, Asian and minority ethnic) patients with MS. This was a stinging attack on our MS service.

I am acutely aware of unconscious bias in healthcare and her criticism hurt. For example, a very prestigious neurorehabilitation centre refused to publish an audit in the early naughties, which showed that people from upper-income groups (socioeconomic classes 1 & 2) were massively overrepresented in their unit compared to patients from lower socioeconomic classes. How and why unconscious biases creep into healthcare are well studied and understood, but to be accused of it yourself was sobering.

To counter the criticism against Barts-MS, which serves the most diverse population in London and arguably in the UK, we decided to do an audit of the patients on disease-modifying therapies in our centre. We argued that if we did have unconscious biases that favoured the well-educated and rich white middle classes they would more likely to be on higher efficacy DMTs than the less well educated, poorer local patients under our care. We felt somewhat vindicated when we showed that within our service socioeconomic class did not predict a person’s likelihood of being on any particular tier of DMT. In other words, if you get into our service regardless of who you are we will treat you the same.

The exercise of doing this audit also triggered a deep desire in me to find out more about the social determinants of health (SDoH) and how they impact on MS outcomes. I have spent the better part of 5 years studying the SDoH, which has led to our #ThinkSocial campaign, our social capital research projects and for a SDoH workstream to be a part of our Raising-The-Bar initiative. Our motto is ‘no patient should be left behind’ and we mean it when we say it.

In fact, I may have developed a conscious bias in favour of BAME patients with MS. As BAME patients with MS have a worse prognosis they are often given a worse prognostic profile, which results in us steering them towards higher efficacy therapies. The patient I described yesterday, who I am now fast-tracking through diagnostic tests despite the COVID-19 restrictions on our service, is being driven by the fact that he comes from a BAME background. I am now questioning myself if this patient happened to be white would he be getting the same treatment approach from me? I sincerely hope so.

Saúl Reyes et al. Socioeconomic Status and Disease-Modifying Therapy Prescribing Patterns in People With Multiple Sclerosis. Mult Scler Relat Disord. 2020 Feb 24;41:102024.

Aims: To examine the association between socioeconomic status (SES) and disease-modifying therapy (DMT) prescribing patterns in people with relapsing-remitting multiple sclerosis (pwRRMS).

Methods: A cross-sectional analysis was conducted among pwRRMS treated with a DMT in the neuroinflammation service at The Royal London Hospital (Barts Health NHS Trust). Study data were collected between July and September 2017. SES was determined by patient income and education extracted from the English Index of Multiple Deprivation. Based on their efficacy, DMTs were categorized as moderate efficacy (Glatiramer Acetate and Beta-Interferons), high efficacy (Cladribine, Fingolimod and Dimethyl Fumarate) and very-high efficacy therapies (Natalizumab and Alemtuzumab). Multinomial logistic regressions were performed for univariate and multivariate models to assess differences between SES and DMT prescribing patterns.

Results: Treatment consisted of moderate efficacy (n = 76, 12%), high efficacy (n = 325, 51.3%) and very-high efficacy therapies (n = 232, 36.7%). Medians for income and education deciles were 4 (IQR 3-7) and 6 (IQR 4-8), respectively. After multinomial logistic regression analysis, patient income was not associated with increased odds of being treated with high efficacy (OR, 0.92; 95% CI, 0.82-1.04; p = 0.177) or very-high efficacy DMTs (OR, 0.95; 95% CI, 0.85-1.06; p = 0.371). Similarly, patient education was not associated with being treated with high efficacy (OR, 0.91; 95% CI, 0.80-1.03; p = 0.139) or very-high efficacy therapies (OR, 0.92; 95% CI, 0.81-1.04; p = 0.188).

Conclusions: SES was not predictive of DMT prescribing patterns in pwRRMS. Whilst this appears reassuring within this universal health care setting, the same methodology needs to be applied to other MS services for comparison. Data could then be further interrogated to explore potential socioeconomic inequities in DMT prescribing patterns across the UK.

CoI: multiple

HAPPY WORLD MS DAY!

Today is World MS Day 2020 and its theme is ‘connections’.

MS Connections are about building community connection, self-connection and connections to quality care. The event is coordinated by the MSIF, who want to challenge social barriers that leave pwMS feeling lonely and socially isolated. Together, they are advocating for better services and are celebrating support networks. Another action the championing of self-care.

For some of you, these objectives may look very soft and fluffy, when all you want is hard science, innovation and new treatments to prevent, stop, reverse and cure MS. However, if you been in the field for decades you realise that science happens slowly and incrementally and even when it does deliver real groundbreaking innovations and results, the field is often not ready to adopt them. Why? Social scientists know the answers to this, which is why I spend more time nowadays reading the social sciences than I do reading the sciences.

For example, the biggest class of innovations to hit the field of MS during my career are the immune reconstitution therapies (IRTs), i.e. alemtuzumab, cladribine and HSCT. Many pwMS who have been treated with IRTs are now in longterm remission and have potentially been cured of their MS. Yes, these individuals may live out their lives with no further attacks. The rate of adoption of IRTs is depressingly low and with COVID-19 and its fallout, they are being abandoned as treatment options by many HCPs.

I think we as a field are making a big mistake by abandoning IRTs. As a class, IRTs have to be the answer to how we will treat MS in the future. I envisage using IRTs as true induction therapies and following them with targeted maintenance treatments (e.g. antivirals) and add-on remyelination and neurorestorative therapies in the future. IRTs are the gateway to really changing the lives of pwMS, yet we seem to be abandoning them.

Please note I personally think anti-CD20 therapies should be used as IRTs; i..e. two years of treatment with a high-dose followed by maintenance therapy. This will also make anti-CD20 therapies safer as a class; their Achille’s heel will always be longterm safety.

Back to World MS Day. The objectives of #MSConnections reminds me of our #ThinkSocial campaign, which is to focus on the social determinants of health (SDoH) and how they impact on MS outcomes.

What are the SDoH?

The SDoH are life-enhancing resources, such as food supply, housing, economic and social relationships, transportation, education and health care, whose distribution across populations effectively determines length and quality of life. As MS is such a disabling disease with poor quality of life it is likely to impact on the SDoH, which in turn will have a negative feedback and make MS outcomes worse. This vicious cycle has to be broken if we want to optimise MS outcomes; i.e. when applying the philosophy of marginal gains we can’t ignore the SDoH when managing someone with MS.

The Swedish study below, which I often quote, is an example of how having MS reduces your earnings. Interestingly, the reduction in earnings even begins before MS diagnosis and clearly increases thereafter. I suspect some people who have prodromal MS have difficulty working, which impacts on the average outcome or earnings. Besides sickness absence and disability pension, educational level and type of occupation are influential determinants of earnings in pwMS. In other words, inequality plays a role in determining your earnings once you have MS. Are you surprised? I am not.

Very few HCPs routinely screen for the SDoH during consultations. I think we are making a mistake by not. The following is a shortlist of some of the SDoH that may impact on MS outcomes:

1. Level of education and health literacy
2. Poverty (absolute or relative)
3. Employment / unemployment
4. Access to social services (personal independent payments, etc.)
5. Home environment (heating, cleanliness, amenities, etc.)
6. Local environment (safety, green spaces, amenities, etc.)
7. Food poverty (absolute or relative)
8. Transport (access and costs)
9. Childcare (access and costs)
10. Social isolation (social networks, access to the internet, mobile phone, data, etc.)
11. Lifestyle factors (sedentary vs. active, smoking, alcohol and other addictions)
12. Need to be looked after by a child (childcarer) or ageing parents or other family members (aged carers)
13. Cognitive impairment and hidden psychiatric comorbidities (depression and anxiety)
14. Physical and emotional abuse

How do we address these issues during a consultation without upsetting pwMS by being too overbearing? Some solutions to improving or at least addressing the SDoH could include:

1. Provide information about IT solutions to help pwMS.
2. A high-risk register of patients within the MS service; patients on this list would need to be seen and contacted more frequently, ideally on pre-planned and regular basis.
3. Selective home visit programme.
4. Making sure patients know that they can get hospital transport so they don’t go out of pocket or reimburse their travel costs.
5. Convert were possible physical face-2-face visits with telemedicine options (COVID-19 has turbocharged this change).
6. To do a complex needs assessment similar to what is done in other disease areas to identify high-risk or vulnerable patients.
7. Encourage the government to waive prescription costs for pwMS and other disabilities.
8. Encourage the government to create a healthy food voucher system for pwMS and other disabilities.
9. Encourage the government to improve social services for pwMS and other disabilities.
10. Engage pwMS and include them in your service; for example, using an MS Health Champions model.
11. Explore social prescribing to increase social capital.
12. Enrol all patients into a lifestyle and wellness programme.

On World MS Day do you have any suggestions we can add to the list? I co-chair the SDoH workstream on our Raising the bar initiative so any workable ideas may get implemented in the NHS or as part of social services.

Wiberg et al. Earnings among people with multiple sclerosis compared to references, in total and by educational level and type of occupation: a population-based cohort study at different points in time. BMJ Open. 2019 Jul 11;9(7):e024836.

OBJECTIVES: To investigate earnings among people with multiple sclerosis (PwMS) before and after MS diagnosis compared with people without MS, and if identified differences were associated with educational levels and types of occupations. Furthermore, to assess the proportions on sickness absence (SA) and disability pension (DP) in both groups.

DESIGN: Population-based longitudinal cohort study, 10 years before until 5 years after MS diagnosis.

SETTING: Working-age population using microdata linked from nationwide Swedish registers.

PARTICIPANTS: Residents in Sweden in 2004 aged 30-54 years with MS diagnosed in 2003-2006 (n=2553), and references without MS (n=7584) randomly selected by stratified matching.

OUTCOME MEASURES: Quartiles of earnings were calculated for each study year prior to and following the MS diagnosis. Mean earnings, by educational level and type of occupation, before and after diagnosis were compared using t-tests. Tobit regressions investigated the associations of earnings with individual characteristics. The proportions on SA and/or DP, by educational level and type of occupation, for the diagnosis year and 5 years later were compared.

RESULTS: Differences in earnings between PwMS and references were observed beginning 1 year before diagnosis, and increased thereafter. PwMS had lower mean earnings for the diagnosis year (difference=SEK 28 000, p<0.05), and 5 years after diagnosis, this difference had more than doubled (p<0.05). These differences remained after including educational level and type of occupation. Overall, the earnings of PwMS with university education and/or more qualified occupations were most like their reference peers. The proportions on SA and DP were higher among PwMS than the references.

CONCLUSIONS: The results suggest that the PwMS’ earnings are lower than the references’ beginning shortly before MS diagnosis, with this gap increasing thereafter. Besides SA and DP, the results indicate that educational level and type of occupation are influential determinants of the large heterogeneity of PwMS’ earnings.

CoI: multiple

How healthy is your lifestyle?

Barts-MS rose-tinted-odometer ★★★★★

It is a no-brainer. A healthy lifestyle is one of the most effective preventive health interventions available. The study below shows that you can increase your chances, by a factor of over 20, of a life expectancy free of diabetes, cardiovascular diseases, and cancer at age 50 by making ensuring you maintain 4 or 5 low-risk lifestyle factors; i.e. not smoking, staying trim, doing moderate to vigorous physical activity, keeping your alcohol intake moderate and eating a quality diet.

Although this study has implications for the general population the message is applicable to pwMS. All these lifestyle factors have been linked in some studies to MS outcomes. In other words, everyone with MS should assess their lifestyle to see if they can change things to maximise their longterm outcome.

Another thing you can do is to ask your HCP to score themselves on these five factors. I maintain that HCPs have a responsibility to lead by example and they should be practising what they preach. This is why I am determined this year to max-out on all five of these factors so that I can look my patients in the eye and say “I am with you all the way”.

What is not discussed in this paper is the fact that what determines your ability to live a ‘healthy life’ is often down to the social determinants of health (SDoH) and these are usually beyond the control of the individual. Education, poverty, inequality, social isolation, a poor environment, lack of self-control, a sense of helplessness, chronic stress, etc. are all factors that make adopting a healthy lifestyle almost impossible. This is why our #ThinkSocial campaign is really a political campaign. Without politicians acknowledging the importance of the SDoH little will change.

Please let us know if you are managing to adopt and maintain a healthy lifestyle and how you have done it; success stories are more motivating than pontificating from a soap-box.

Li et al. Healthy lifestyle and life expectancy free of cancer, cardiovascular disease, and type 2 diabetes: prospective cohort study. BMJ 2020;368:l6669

Objective: To examine how a healthy lifestyle is related to life expectancy that is free from major chronic diseases.

Design: Prospective cohort study.

Setting and participants: The Nurses’ Health Study (1980-2014; n=73 196) and the Health Professionals Follow-Up Study (1986-2014; n=38 366).

Main exposures: Five low-risk lifestyle factors: never smoking, body mass index 18.5-24.9, moderate to vigorous physical activity (≥30 minutes/day), moderate alcohol intake (women: 5-15 g/day; men 5-30 g/day), and a higher diet quality score (upper 40%).

Main outcome: Life expectancy free of diabetes, cardiovascular diseases, and cancer.

Results: The life expectancy free of diabetes, cardiovascular diseases, and cancer at age 50 was 23.7 years (95% confidence interval 22.6 to 24.7) for women who adopted no low-risk lifestyle factors, in contrast to 34.4 years (33.1 to 35.5) for women who adopted four or five low-risk factors. At age 50, the life expectancy free of any of these chronic diseases was 23.5 (22.3 to 24.7) years among men who adopted no low-risk lifestyle factors and 31.1 (29.5 to 32.5) years in men who adopted four or five low-risk lifestyle factors. For current male smokers who smoked heavily (≥15 cigarettes/day) or obese men and women (body mass index ≥30), their disease-free life expectancies accounted for the lowest proportion (≤75%) of total life expectancy at age 50.

Conclusion: Adherence to a healthy lifestyle at mid-life is associated with a longer life expectancy free of major chronic diseases.

CoI: multiple

Inequality

Prof G why the sudden and recent fixation with inequality?

There is overwhelming evidence that many health outcomes, including life expectancy, infant mortality, obesity, cancer survival rates, suicide, addiction and many more are linked to the level of economic inequality within society. In short, greater economic inequality leads to worse health outcomes.

Inequality does not necessarily refer to poverty, but relative poverty in society. For example, somebody in the lowest decile of the income distribution of a rich country such as the UK may not be considered poor by international standards, but relative to other people in the UK they are poor.

If you are interested in understanding more about this can I suggest you read Danny Dorling’s book “Injustice: Why social inequality still persists”. In this book, he uses the example of not be able to go on a family holiday as been a good indicator of the ‘have-nots’. The corollary is being able to afford an annual family holiday in modern Britain defines you as being one of the ‘haves’.

Why inequality results in poor health outcomes is complex. Michael Marmot argues in “The Health Gap: The Challenge of an Unequal World” that it causes chronic stress that results in poor outcomes. Please note stress is a biological response and can be measured; when people are stressed they produce excessive cortisol (a steroid) that then triggers a biological cascade that drives many disease processes and behavioural responses. The implications of this are that at a population level stress is bad and to improve outcomes you need population-based interventions to reduce stress. The latter is easier said than done when you have at least half the political establishment pushing a neoliberal (market) agenda that has been shown to increase inequality.

How does this relate to MS? At the moment we are not sure if inequality affects MS outcomes, but we suspect it does. Many comorbidities associated with inequality, such as smoking, obesity, hypertension, diabetes, stroke and myocardial infarction are associated with a worse MS prognosis. In addition, healthcare literacy and healthcare utilization are also linked to inequality and this is very relevant to MS.

To address this data gap we are starting a programme of work in the UK to investigate inequality and whether or not it is impacting on MS practice, MS outcomes and access to MS services. Although we started this at Barts-MS the main body of work will be done under one of the MS Academy workstreams we have defined as part of our ‘Raising the Bar’ initiative. Please note this is not just about defining and measuring inequality in MS Service provision and use, but implementing service change to make sure no MSers are left behind.

I note many commentators on this blog don’t like us highlighting political issues and would prefer us to focus on science. I would argue healthcare is politics and politics is health. If you are an HCP you can’t practice your trade without getting involved with politics or at least having a position on political issues.

The one positive outcome for me from the Brexit debacle is that it has made me realise that I didn’t have the background knowledge to have an informed opinion on Brexit and the reasons for Brexit. As a result of the self-exploration Brexit triggered (see Medium post), I have become an amateur economist, behavioural psychologist and geopolitician. All this has changed my worldview. This is why we have launched our #ThinkSocial campaign to raise awareness and make sure every HCP working in the MS space understands how inequality impacts on their patients and rather than accepting the status quo they should do something about it.

CoI: multiple

Results time

It is time to set in stone our #CrowdThink competition results. We had over 110 responses; thank you. If you want to know more about the rationale behind this competition you need to read my post on the DODO trial and the post explaining the rationale behind the COMPETITION.

Study 1: Oral Ponesimod Versus Teriflunomide In Relapsing MUltiple Sclerosis (OPTIMUM).

The Crowd has predicted that ponesimod will reduce the ARR (relative annualised relapse rate) and CDP (confirmed disability progression) compared to teriflunomide by 33.8% (interquartile range=24.5-44.3%) and 21.2% (interquartile range=10.0-25.0%), respectively.

This would suggest that ponesimod is probably batting in the same league as fingolimod. I wouldn’t put too much weight on the TRANSFORMS study that compared fingolimod to interferon-beta-1a. The majority of subjects were failing interferon who went into that study and were then randomised to fingolimod or back onto interferon-beta-1a. This study inflated fingolimod’s relative efficacy as it was being compared to interferon-beta failures on interferon-beta.

Study 2: Efficacy and Safety of Ofatumumab Compared to Teriflunomide in Patients With Relapsing Multiple Sclerosis (ASCLEPIOS I & II)

The Crowd has predicted that ofatumumab will reduce the ARR (relative annualised relapse rate) and CDP (confirmed disability progression) compared to teriflunomide by 41.2% (interquartile range=34.0-49.0%) and 29.3% (interquartile range=20.0-37.3%), respectively.

These results are interesting and broadly put ofatumumab in the same ballpark as ocrelizumab as well; 41% is close enough in my book to 47% for it not to register as being meaningfully different to ocrelizumab. In comparison, 29.3% for CDP is too far away from 40% to be dismissed. The question is this because of ofatumumab being inferior to ocrelizumab? Or teriflunomide is superior to interferon-beta-1a (Rebif)? I would favour the latter interpretation. The former interpretation would support the hypothesis for the need to target intrathecal B-cells and that the higher dose of ocrelizumab is superior at doing this compared to the smaller but more frequent ofatumumab dosing. These results would support us pushing for the DODO study to be done.

However, would it not be a more interesting story if ofatumumab out-performed ocrelizumab? This would be against my predictions, but it opens a new vista on how anti-CD20 therapies work. If ofatumumab outperforms ocrelizumab it would argue for a peripheral mode of action, i.e. keeping peripheral B-cells depleted continuously, rather than using intermittent depletion paradigm of rituximab and ocrelizumab. It would also challenge the hypothesis that we need to have CNS penetration for targeting of the intrathecal B-cell compartment.

The peripheral B-cell hypothesis would raise very interesting questions about whether or not anti-CD20 therapy is working as an anti-EBV agent and keeping the memory B cell compartment, which hosts EBV, suppressed.

I have already been criticised by a few people at this conference for my musings on the potential results of these trial. Don’t we live in a world where free and open thought is allowed? I speculate and write these sorts of posts deliberately to be controversial. But I would hope that they stimulate you to think more deeply about MS and what these results could mean for us and in particular people with MS.

Let’s hope it is not the same-old, same-old; i.e. another me too study of an anti-CD20. Let’s hope the results support either the central B-cell depletion hypothesis or the peripheral-continuous B-cell depletion hypothesis. The former supports our programme of activities to scrub the brain clean of B-cells and plasma cells and the latter to treat MS with anti-virals, in particular, anti-EBV drugs.

To conclude, I was very disappointed that two-thirds of you chose the MRI lego set over my #ThinkSocial T-shirt as a prize. I am clearly not a very good T-shirt designer ;-(

CoI: multiple

#ThinkSocial – work, work, work

The following is an excerpt from the executive summary of ‘Health and Work Champions: a Pilot Training Programme’, (Martin et al. Feb 2018). I am highlighting it because it has relevance to MSers and MS-related HCPs. HCPs are being fingered as part of the unemployment problem; “healthcare practitioners, who may consider that giving advice to refrain from work is part of their duty of care“.

Is it inevitable that MS will lead to early unemployment or medical retirement? What has been your experience with your MS team? Have they helped try and keep you employed? Any suggestions to help?

Shift.ms have put together material to help HCPs. Please check-it out.

“Ill-health among working-age people costs the UK economy £100bn a year in sickness absence (DWP and DH, 2016). Unemployment is not only costly for society but also bad for health because of its association with greater physical and mental health morbidity and mortality (Janlert, 1997; Martikainen and Valkonen, 1996; Waddell and Burton 2006).

The Royal College of Occupational Therapists (RCOT) and Public Health England (PHE) share a common aim to close the disability employment gap and support people who wish to remain in work or return to work after illness, injury or disability. Hence, they have jointly set up the Health and Work Champions Project, which features peer-to-peer education to shift healthcare culture in relation to work and health. This project features as an example of good practice in both the original Government Green paper about employment and disability (DWP and DH 2016) and the follow-up command paper Improving Lives: the Future of Work, Health and Disability (DWP and DH 2017).

Research suggests that unhelpful misconceptions around work and health can sometimes be reinforced by healthcare practitioners, who may consider that giving advice to refrain from work is part of their duty of care (Wade and Halligan, 2004; Mowlam and Lewis, 2005; Pires et al, 2006). Healthcare professionals’ attitudes and beliefs in this area may influence the outcome of rehabilitation (Bishop, 2008) and it is reported that they do not routinely address work issues (Moore, 2011).

A shift is therefore required that would see it become routine practice across healthcare to use employment as a useful functional outcome of healthcare interventions and a clinical tool for assessing a patient’s/service user’s recovery/or adaptation to illness or injury. Asking questions about staying in or return to employment will become standard practice for all healthcare professionals. The project aimed to use Health and Work Champions to facilitate the shift while also providing the Champions with leadership roles in their employing organisations to raise their profile and utilise their expertise in occupation, health and wellbeing.

Evidence suggests that most health care professionals tend to base practice decisions on entry-level education and personal experience (Schreiber et al, 2005). They typically solve clinical problems through consulting with their peers and opinion leaders before examining empirical evidence, which supports the choice of a Champion’s model with opportunities for interpersonal interaction, when promoting quality improvements in routine clinical practice (White, 2011). “

At our second MS Services Variance meeting, ‘Raising the Bar’, in Birmingham last week my colleague Helen Ford and I co-chaired the workstream on the social determinants of health (SDoH).

What are the SDoH?

The SDoH are life-enhancing resources, such as food supply, housing, economic and social relationships, transportation, education and health care, whose distribution across populations effectively determines length and quality of life. As MS is such a disabling disease with poor quality of life it is likely to impact on the SDoH, which in turn will feedback and make MS outcomes worse. This vicious cycle needs to be broken if we want to optimise MS outcomes; i.e. when applying the philosophy of marginal gains we can’t ignore the SDoH when managing someone with MS.

The following is a selection of slides we put together around the SDoH theme.

Do you have an example of how the SDoH can impact on a person with MS?

The study highlighted below from Sweden is an example of how MS reduces your earnings. Interestingly, the reduction in earnings even begins before MS diagnosis and clearly increases thereafter. I suspect some people who have prodromal MS have difficulty working, which impacts on the average outcome or earnings. Besides sickness absence and disability pension, educational level and type of occupation are influential determinants of earnings in pwMS. In other words, inequality plays a role in determining your earnings once you have MS. Are you surprised? I am not.

When we asked whether or not MS HCPs routinely screen for the SDoH very few hands went up in the room. The hands that went up tended to belong to occupational therapists; they clearly need to look at SDoH as part of their treatment plans. No neurologists put up their hands and therein lies a problem or a solution depending on how you look at things.

The following is a short list of some of the SDoH that may impact on MS outcomes, which we discussed.

Level of education and health literacy
Poverty (absolute or relative)
Employment / unemployment
Access to social services (personal independent payments, etc.)
Home environment (heating, cleanliness, amenities, etc.)
Local environment (safety, green spaces, amenities, etc.)
Food poverty (absolute or relative)
Transport (access and costs)
Childcare (access and costs)
Social isolation (social networks, access to the internet, mobile phone, data, etc.)
Lifestyle factors (sedentary vs. active, smoking, alcohol and other addictions)
Need to be looked after by a child (child carer) or ageing parents or other family members (aged carers)
Cognitive impairment and hidden psychiatric comorbidities (depression and anxiety)
Physical and emotional abuse

How do we address these issues in an MS clinic without upsetting our patients by being too overbearing? We did agree that there was a lot we could potentially do about some of these SDoH and that we had an obligation to at least consider these as part of our routine management of our patients and their families. Some ideas that emerged in our session include the following:

Provide information about IT solutions to help pwMS.
Start a high-risk register of patients within our service; patients on this list would need to be seen and contacted more frequently, ideally on pre-planned and regular basis.
Start a home visit programme. Most services have had to stop home visits because of resource and staffing issues.
Make sure our patients know that they can get hospital transport so they don’t go out of pocket or reimburse their travel costs.
Convert were possible physical face-2-face visits with telemedicine options.
To do a complex needs assessment similar to what is done in other disease areas to identify high-risk or vulnerable patients.
Lobby the government to waive prescription costs for pwMS and other disabilities.
Lobby government to create a healthy food voucher system for pwMS and other disabilities.
Lobby government to improve social services for pwMS and other disabilities.
Engage pwMS and include them in your service; for example, using an MS Health Champions model.
Explore social prescribing to increase social capital.
Enrol all patients into a lifestyle and wellness programme.

OBJECTIVES: To investigate earnings among people with multiple sclerosis (PwMS) before and after MS diagnosis compared with people without MS, and if identified differences were associated with educational levels and types of occupations. Furthermore, to assess the proportions on sickness absence (SA) and disability pension (DP) in both groups.

DESIGN: Population-based longitudinal cohort study, 10 years before until 5 years after MS diagnosis.

SETTING: Working-age population using microdata linked from nationwide Swedish registers.

PARTICIPANTS: Residents in Sweden in 2004 aged 30-54 years with MS diagnosed in 2003-2006 (n=2553), and references without MS (n=7584) randomly selected by stratified matching.

OUTCOME MEASURES: Quartiles of earnings were calculated for each study year prior to and following the MS diagnosis. Mean earnings, by educational level and type of occupation, before and after diagnosis were compared using t-tests. Tobit regressions investigated the associations of earnings with individual characteristics. The proportions on SA and/or DP, by educational level and type of occupation, for the diagnosis year and 5 years later were compared.

RESULTS: Differences in earnings between PwMS and references were observed beginning 1 year before diagnosis, and increased thereafter. PwMS had lower mean earnings for the diagnosis year (difference=SEK 28 000, p<0.05), and 5 years after diagnosis, this difference had more than doubled (p<0.05). These differences remained after including educational level and type of occupation. Overall, the earnings of PwMS with university education and/or more qualified occupations were most like their reference peers. The proportions on SA and DP were higher among PwMS than the references.

CONCLUSIONS: The results suggest that the PwMS’ earnings are lower than the references’ beginning shortly before MS diagnosis, with this gap increasing thereafter. Besides SA and DP, the results indicate that educational level and type of occupation are influential determinants of the large heterogeneity of PwMS’ earnings.

Unassisted

Let’s talk about death, that is unassisted suicide.

The meta-analysis below, not surprisingly, shows that if you have MS your chances of suicide are about twice the background rate. The risk is particularly high at diagnosis compared to symptom onset. I suspect this latter is an artificial finding; if you commit suicide before you are diagnosed with MS the code ‘multiple sclerosis’ is unlikely to be recorded alongside suicide as a cause of death. Despite this, it is clear that suicide is a not such an uncommon cause of jumping from EDSS 2.0 or 3.0, at diagnosis, to EDSS 10 or death.

In my career as an MSologist, I have had two patients commit suicide. Both made me question whether or not we could have done something to prevent their deaths. In both cases, the answer was yes; I could have done much more to manage their associated depression and social isolation. HCPs working in MS need to skilled in recognising depression and suicide risk. One of the reasons why we are running our #ThinkSocial campaign is to address these issues and the social determinants of outcomes in MSers.

It is understandable why MSers resort to suicide. MS is a devastating diagnosis with major consequences for individuals. As it is a brain disease it affects your personality and hence interpersonal relationships. MSers are often anxious and depressed. It has a major impact on your life trajectory. Most MSers given sufficient time will become disabled and unemployed. The loss of income results in downward social drift, often causing poverty and in some cases severe social isolation. It is not surprising that some MSers turn to suicide as a way out.

Society doesn’t help. It rates the life of someone with MS who has lost both lower and upper limb function (EDSS>=8.5), who need 24-hour a day care, as having a quality of life worse than death. However, it doesn’t have to be this way. I suspect this negative view of MS will change as a result of earlier diagnosis and treatment of the disease to prevent end-organ damage and its consequences.

We are beginning to see a transformation in outcomes as new cohorts of MSers are being diagnosed earlier and treated effectively. The problem we have is getting the wider MS community to acknowledge that MS as a neurological emergency. When we say ‘Time Matters’ and ‘Time is Brain’ we really mean it. This is why we want to do our #AttackMS trial to try and change attitudes to treating MS.

I am aware talking about death is a taboo, but unless we do how do we expect MSers to take decisions about their treatment seriously. Yes, seriously. I often speak about the Gambler’s dilemma, a cognitive bias that affects both MSers and their HCPs.

A gambler never goes into a casino to lose money. However, the gambler knows that on average he/she will lose money. The cognitive bias that affects MSers is that they will be the lucky one that will win; they are going to be the lucky one that will turn out to have benign MS. ‘I am going to be the one that ends up with no problems in the future, therefore, I don’t need to be treated’ or ‘ No, that treatment is far too risky for me, I will take my chances with an injectable’. Chances are you will be wrong.

As I have said given sufficient time MS causes disability in the majority of people with MS. Therefore the practices of watchful waiting (a British medical tradition) and/or slow stepwise escalation of treatment comes at a cost to individuals with MS. This is why it is so important to buy into an aggressive treatment goal when you are diagnosed with MS.

The treatment targets in MS have evolved from simply reducing the frequency of relapses (NEDA-0) to becoming relapse-free (NEDA-1) to having no measurable disease activity (NEDA-3), to preventing end-organ damage (NEDA4 and NEDA-5) to finally maximising brain health to allow you to age normally.

In the future, we will want to cure you of your MS before any meaningful damage is done to your brain and spinal cord, and we will want to prevent people at risk of MS getting the disease. To achieve these targets we need a much more proactive treatment approach and we also need to manage MS holistically, which includes actively preventing and managing comorbidities and focusing on wellness and lifestyle factors.

The cynics will be poo-pooing my enthusiasm, but if we don’t aim high we will never achieve a world without MS and suicide will remain a problem.

Let’s talk about death, but focus on what needs to be done to prevent it!

Shen et al. Association between suicide and multiple sclerosis: An updated meta-analysis. Mult Scler Relat Disord. 2019 Jun 19;34:83-90.

BACKGROUND: Whether multiple sclerosis is associated with a higher rate of suicide remains controversial. Therefore, we aimed to evaluate the risk of suicide in multiple sclerosis patients based on a meta-analysis of previously published data.

METHODS: We searched for studies that measured the suicide risk in multiple sclerosis patients compared with the general population that were published up to 1 December 2018 in PubMed, EMBASE, and Web of Science databases. Sixteen studies fulfilled the eligibility criteria. We performed random-effects meta-analyses to calculate suicide rate ratio (SRR) and 95% confidence intervals (CIs) for patients with multiple sclerosis.

RESULTS: The association between suicide and multiple sclerosis was statistically significant with a pooled SRR 1.72 (95%CI 1.48-1.99, I-squared = 55.0%). Risk of suicide at diagnosis of multiple sclerosis (SRR 2.12, 95% CI 1.84-2.46; I-squared = 4.4%) was higher than the risk of suicide at symptom onset (SRR 1.69; 95% CI 1.43-2.00; I-squared = 0.0%). Gender may exert an influence on the impact of sex on the association between MS multiple sclerosis and suicide, but this requires is controversial and need further studies to demonstrate.

CONCLUSION: Our meta-analysis shows a significant association between suicide and multiple sclerosis, although ethnic and geographical differences were not considered. These findings should be confirmed and extended in future large studies.