social capital – Prof G's MS Blog Archive

#ThinkSocial

At Barts-MS we #ThinkSocial. We hypothesise that MS is like other chronic diseases and is affected by social capital and the social determinants of disease (SDOD). In short, if you have high social capital you will have a better outcome and if you have a favourable social profile you will also do better regardless of the type of MS you have. We are now actively researching these issues and have posted about them in the past and review them in this short video.

We hypothesise that you can increase your social capital by adopting practices to maintain and develop new relationships. These reciprocal relationships help you develop resilience to cope with chronic diseases such as MS. To this end, we are pleased to be involved with Oceans of Hope; a sailing charity that will ‘change the perceptions of multiple sclerosis by showing what is possible when people with a chronic disease are empowered to conquer their individual challenges, by engaging people whose lives are touched by MS and developing networks as a foundation for life-changing behaviours’.

Saúl Reyes, our Social Capital ECTRIMS fellow, Sue Radford (MS Brain Health) and I are in Edinburgh today to support Oceans of Hope and to celebrate what they are doing for people with MS. Sailing in the open ocean may seem quite extreme, but you could launch and run your own initiatives locally.

A lot of you were quite upset by my post of a patient of mine who is socially isolated and living on a diet of tea & toast. As a medical practitioner working in the NHS as it is currently configured I am relatively powerless to change this lady’s trajectory. This is why we need social prescribing and initiatives like Oceans of Hope, which promise to change things.

I envisage a future when social prescribing will be part and parcel of the holistic MS service we provide and we will have much less social isolation and more importantly better MS outcomes and happier MSers. Or am I wrong?

#ThinkSocial

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.

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.

Does your neurologist walk the talk?

Thanks to Daniel Kahneman and Amos Tversky behavioural psychology and behavioural economics have become very sexy. Kahneman & Tversky have spawned an industry of nudge theorists; people who devise ways of getting populations of people to do things that are good for them.

People with MS are no different from the general population when it comes to doing what they are told to do. We have major issues getting MSers to adhere to lifestyle interventions.

In this long-term follow-up study below MSers who report higher levels of health promotion activities and greater functional ability tend to experience lower levels of fatigue, pain and sleep disturbance and higher levels of cognitive abilities in subsequent years.

Is this the chicken or the egg; i.e. did MSers who were simply doing better more likely to engage in healthy activities compared to those doing less well? The only way to sort this out is to do a randomised controlled trial, which is virtually impossible for lifestyle interventions. What we need are ways of getting MSers to adopt a Brain Healthy lifestyle as part of their routine management plan. The following is the list of things to do:

Smoking – if you are a smoker stop smoking.
Exercise – try and do 5x 30 min aerobic sessions per week. If this is too hard and you are not too disabled you can try HIIT (high-intensity interval training) instead.
Diet – eat a healthy diet. My philosophy is to eat ‘real-food’ that is culturally compatible with your family and friends. Avoid ‘fad diets’ and processed foods, particularly processed carbohydrates.
Alcohol – don’t consume too much alcohol, it is neurotoxic even in relatively small amounts.
Sleep – please make sure you don’t have a sleep disorder and make sure you get good quality sleep.
Comorbidities – make sure you are screened for co-morbidities (hypertension, diabetes, impaired glucose tolerance, high cholesterol levels and dyslipidaemia) and get them treated.
Infections – try and make sure you don’t get recurrent avoidable infections. The big one in MSers is UTIs.
Concomitant medications – review your medications and try and reduce your anti-cholinergic burden as much as possible.
Stress, depression and anxiety – if you suffer from these get them treated and managed actively. If you haven’t tried mindfulness therapy it is worth giving it a go.
Social capital – work on your social networks. Make sure you have time for friends and family.
Menopause – if you are menopausal you may want to consider hormone replacement therapy. The evidence on whether HRT makes a difference to MS outcomes is weak but interesting enough to consider it if you are a woman.
Wellness – this not only refers to your lifestyle but how it relates to the environment and your spirituality. Many argue you need to live in harmony with the environment to be truly well. I tend to agree. For example, my problem is my carbon footprint, which is impacting on my wellness.

If you have any suggestions to help other MSers with adhering to these principles, or you have any other to add to the list, please feel free to comment. Don’t be shy.

I also think you need to find yourself a neurologist and/or HCP who walks the talk. It is difficult to take a neurologist who is obese, smokes and clearly does not look after himself or herself, seriously when they tell you to improve your lifestyle. Or maybe I am wrong?

Becker et al. Functional and health promotion predictors of PROMIS® scores in people with multiple sclerosis. Health Psychol. 2019 May;38(5):431-434.

OBJECTIVE: The purpose of this study was to examine the impact of perceived functional abilities and health promotion activities on subsequent symptom experience among those who have lived with multiple sclerosis (MS) for many years.

METHODS: This longitudinal mailed survey study examined Health Promoting Lifestyle Profile II (HPLP) scores and MOS SF 36 scores as predictors of PROMIS® Pain Interference, Pain Intensity, Fatigue, Sleep Disturbance, and Applied Cognition Abilities Scoresamong 260 adults with MS. The community-dwelling sample was initially recruited from the mailing list of the MS Society in a large southwestern state. Respondents were predominantly female, with an average age of 67 years. They had been diagnosed an average of 30 years. Forty per cent reported relapsing-remitting MS, and 41% have the more severe progressive form of the disease.

RESULTS: HPLP and SF 36 Role Physical, Role Emotional, and Social Function scores assessed in 2013 were moderately correlated (r > .30) with PROMIS® Fatigue and PROMIS® Cognitive Abilities scores measured in 2014 and were somewhat predictive of PROMIS® Pain and Sleep Disturbance scores (r > .20). These results were replicated in an analysis using data from Years 2016 and 2017.

CONCLUSIONS: Findings suggest that those who report higher levels of health promotion activities and greater functional ability may experience lower levels of fatigue, pain, and sleep disturbance and higher levels of cognitive abilities in the subsequent year.

Reinventing the wheel or the 4×4

We were rightly criticised last year for holding a meeting that highlighted the problem of variance in the provision of MS services, in the NHS. without a plan and vision about how to change things. I hope we have listened to you. The follow on meeting that we are hosting next month (8th-9th July) has a more ambitious agenda; it will even come with a 3-year action plan.

I have always made the argument that variance, when it comes to the provision of healthcare services, is a euphemism for inequality and that simply represents the haves and have-nots in society and the world. Why should someone with MS who lives in place B, or country Y, get a different service to someone with lives in place A or country X? On the other side of the coin, variability creates the engine for change; it is the catalyst for people to do something about the poor services they are providing or receiving; that is assuming they know about the quality of their service and are willing to do something about it.

My colleagues have told me that I shouldn’t beat myself up too much over the problems and criticisms of our first meeting; after all, it was very instructive in that it:

Brought us together as a wider MS community and allowed us to recognise and reflect on the challenges we face in addressing the variance in the NHS.
The meeting was inclusive in that there was no hierarchy in terms of the importance of the people who deliver MS services. We identified ourselves as equals, or partners, and included people with MS.
The meeting made us realise that we have cognitive biases that need to be addressed to make the community inclusive and more diverse. Diversity of ideas is going to be the catalyst for the next phase of our project.
We also realised that variance is not necessarily bad. We need some variance and ways to measure it so that the outliers at the upper end stimulate change. The next meeting is called ‘Raising the Bar’ and refers to improving services across the board.
The meeting also allowed us to get away from the NHS rat race and provided quality thinking time, i.e. time to reflect on the task at hand. This has allowed us to set priorities or specific work streams that will allow us to set key objectives for the programmes of work going forward.

As the chair of the committee, I have been asked to set out my vision for the initiative and define what success will look like for this initiative. To make it tangible I have defined targets at year 1, 2 and 3 and beyond.

YEAR 1

At the end of next year, I would expect all participating centres to actively engage in a national quality audit. This will include providing metrics on the NICE quality standards and several other new metrics that will allow us to assess how good or bad we are at achieving what we have set out to achieve.

My vision is 4×4, i.e. for 75% of patients with uncomplicated MS to be diagnosed within 4 weeks of the specialist MS team receiving a referral letter with a diagnosis of suggestive of MS and for 75% of pwMS, eligible for DMTs under the NHSE guidelines, to be have been offered, counselled and given a date for starting a DMT. Is this too much to expect? These time frames are compatible with our International Brain Health standards so why wouldn’t we aspire to meet them?

YEAR 2

At the end of year 2, all participating centres will have a patient partner programme in place to upskill pwMS on how to navigate their local MS services and how to self-monitor and self-manage their MS. This programme will be developed in partnership with patient organisations and will depend on local champions to make it happen. We are in an era in which knowledge has been democratised. Why shouldn’t people with MS participate in providing their own healthcare and contributing to their own healthcare?

YEAR 3

Participating centres will be working differently and managing MS holistically. This will include programmes to screen and manage comorbidities and to promote lifestyle interventions. Participating centres will collect data on these new activities as part of the annual national audit. As part of this holistic management of MS, there will be a ‘no patient left behind’ philosophy embedded in all MS services. This will require systems to make sure that all people with MS, who are covered by a particular service, will have access to that service. We don’t want vulnerable, less educated or less well off patients to be disadvantaged by the service.

LEADERSHIP

It was clear to us at last year’s meeting that for our vision to be realised we need a new generation of leaders to make things happen. We are therefore proposing putting in place a leadership training programme to equip people with the skills to make things happen. The leadership programme will be small and selective and will focus on doing, i.e. as part of the programme delegates will be expected to participate in and complete a national project. This will be run by Gabriele De Luca who is a shining example of what good leaders can do. Gabriele has experience from the AAN young leadership programme and is passionate about the field himself. It may be worthwhile coming to, and participating in, our meeting just to access the leadership training programme.

SHARING BEST PRACTICE

As always the wheel has usually been invented. Most ideas are not new, but how they have been tested and implemented may be new. We are proposing to use the Variance platform to share best practice. Why reinvent something if it already exists? We expect all centres to share their successes and failures so that others can learn from them. This will hopefully allow MS centres to share their materials and experiences with other centres so as to raise the bar for everyone and to create a collegiate atmosphere. The advantage the MS Academy has is that we already have the infrastructure to make sharing relatively easy.

So if you are reading this post and are attending this year’s meeting don’t be shy; please submit a poster to the meeting on something in your service that you are proud of, or even something you are not so proud of. We will select 3 or 4 posters for a platform presentation to allow wider discussion.

If you have not registered already please do so now there are a few remaining places.

Jetlag

Just arrived back from the AAN 2019 in Philadelphia. Jetlagged, which is why I am writing this at 2 am in the morning.

As always the AAN is more a meeting of meetings or networking in academic lingo. These meetings have allowed us to progress several of our ideas including (1) DrK’s #MSAttack study with natalizumab, (2) to think more deeply about our proposed ADIOS Trial (adaptive dosing ocrelizumab study), (3) support for our plasma cell and (4) social capital hypotheses and to (5) to gain a deeper understanding of the emerging new ’safety’ issues surrounding alemtuzumab.

Alemtuzumab is getting an unnecessarily rough ride. I had an opportunity to review all of the vascular events and AEs that led to the EMA triggering article 20. These are all rare events. The intracranial haemorrhages appear to be related to transient hypertension and may relate to the amount of hydration the US infusion centres use when administering alemtuzumab. It is clear that MSers develop a transient rise in blood pressure when receiving alemtuzumab, which means this rare complication can be derisked with anti-hypertensives.

When it comes to the cases of arterial dissections and arterial thromboses on alemtuzumab I was not convinced alemtuzumab is to blame. The majority of the cases had comorbidities or had had procedures that are a more likely explanation for the ischaemic events. In many of the cases, the events were poorly characterised and it was not clear if they had occurred at all; this is particularly in relation to the so-called myocardial infarctions.

It is clear that most if not all of the ‘vascular cases’ have arisen in the USA. Why? I suspect it is because alemtuzumab is being used in a much riskier and older population compared to the other parts of the world. Herein lies the problem. The fact that the EMA has now copied the FDA and made alemtuzumab a 3rd-line DMT will shift the use of alemtuzumab into a riskier older population and thereby increase the likelihood of us seeing these vascular AEs in Europe.

To be honest I am not convinced that the risk-benefit profile of alemtuzumab has changed at all. I would, therefore, appeal to the EMA to include the new AEs in the SmPC, but not to change alemtuzumab’s label. We need to be able to offer alemtuzumab to MSer with early MS when they have the most to gain from the treatment. I am sure MSers are in the best position to weigh up the risks and benefits of alemtuzumab. My big fear is that restricting access to alemtuzumab will simply increase HSCT tourism abroad.

If I needed proof that our blog is read it was in abundance at the AAN. Several people were interested in our ADIOS trial and were thinking of doing versions of their own. The one caveat was new data that Stephen Hauser presented showing that the efficacy of ocrelizumab may be linked to the level of B-cell depletion, i.e. the greater the peripheral B-cell depletion the greater the treatment effect of ocrelizumab on disability progression. There was no dose-related signal on MRI or relapses because these have a floor effect, i.e. virtually all patients are NEDA 1&2 and hence it is impossible to use these outcomes to assess a dose-effect. The one caveat is the dose effect on disability was confounded by body weight; i.e. the larger the patients the less B-cell depletion. As you know MSers with an increased BMI (body mass index) are at increased risk of comorbidities, which may explain why they do less well on ocrelizumab and the observation has nothing to do with the level of peripheral blood B-cell depletion.

The peripheral B-cell depletion data, however, needs to be taken further and tissue and CNS B-cell depletion kinetics need to be studied further. I am convinced the ADIOS trial will be a good place to start with some of these studies. Clearly, it is time to get our grant writing hats on. We need to do this study in the UK.

DrK and I had several meetings with key stakeholders in Biogen about our #MSAttack study. There is little doubt about the efficacy of natalizumab in MS, its safety even in JCV-positive MSers when used for short periods, its rapid onset of action (weeks) and it reversibility (washout) that make it the only suitable DMT for this study. We have changed our trial design slightly, but hopefully, we will be able to get this study funded in the near future. If the #MSAttack study is successful it will change the way we treat and think about active MS and may help natalizumab obtain a first-line indication, which many MSers and CISers deserve; particularly if you want to save brain and spinal cord.

NeuroDoc Gnanapavan got very excited when she saw some posters supporting the use of proteasome inhibitors as a treatment for autoimmune disease. This supports our new SIZOMUS trial (Safety of IxaZOmib targeting plasma cells in Multiple Sclerosis) to try and scrub the brain clean of plasma cells. We will be letting you know much more about this trial in the next few weeks now that we have ethics and MHRA approvals. We will be needing volunteers for this study.

Saul, or Dr Reyes to some, is now one of the pioneers in studying social capital and MS outcomes. His poster on the topic was well received. It is clear that the social determinants of health outcome are very important and have not been systematically studied in MS. Dr Reyes will be changing all that and has many activities planned as part of his ECTRIMS fellowship The poster he presented at the AAN is self-explanatory, but if you have any queries please don’t hesitate to ask.

I have a new hero or heroine; Dr Riley Bove, from UCSF. Riley has developed a telemedicine service to help people with neurological problems in resource-poor areas. The service is provided for free by the USCF residents and staff and is linked to an educational course to train the staff in these countries. The whole service is run using Zoom an online teleconferencing service. Well done Riley; if you lived in the UK I would be putting your name forward for an honours award from our Queen. And if I had more bandwidth I would join and contribute to your service; maybe something for my retirement? Could this platform be expanded to help diagnose and manage MS in resource-poor settings?

It is now 4:10 am and I am beginning to feel a bit groggy. So I will signoff now but will come back with some more AAN highlights in the week.

CoI: multiple

Skint Britain

Did anyone watch ‘Skint Britain: friends without benefits’ on Channel 4 in the week?

‘Skint Britain: friends without benefits’ looks at the rollout and impact of the new Universal Credit scheme for British people who are unemployed or unable to work. The ‘big idea’ behind universal credit is to incentivise people who are unemployed to work or at least to be shown to be actively seeking work in order to ‘earn their benefits’. The scheme makes some basic assumptions that the people need to be literate and be able to use a web or smartphone based database to log their job seeking activities. One of the young men on the programme clearly had behavioural issues at school and was excluded from education; the result is a 21-year-old man who is unable to read and write. He has been let down by the system and the very same system is now excluding him yet again. He seemed to like animals and was using his pet dog to help him forage and catch wild moles, squirrels and rabbits, to feed himself and his girlfriend. What type of society are we living in that in 2019 we are forcing some of our citizens to forage for food? Not to mention the increasing use of food banks to survive.

Economists glibly refer to Britain as being post-industrial and in the throes of the 3rd industrial revolution, a euphemism for automation and un- or under-employment, without considering what we are doing to society. We are now a society of haves and have-nots; a society that is more divided than ever. The have-nots, who are touchingly, albeit tragically, portrayed in this Channel 4 documentary have little hope of getting out of the economic trap society has created for them.

On a personal note, I am seeing the impact of Britain’s new social policies on patients in my care. As you are aware most of my patients with MS are unemployed. As a result, a large proportion of my patients are on benefits and depend on these to survive and participate in society. A typical example is Susan, a patient of mine with MS, who I saw in clinic last week. Susan has secondary progressive MS and lives alone in a small flat in an East London tower block. Susan’s benefits were cut last year and as a result she is finding it increasingly difficult to come out each month on her meagre allowance. The person who reassessed Susan for her benefits is expecting Susan to look for and find work. Susan is semi-skilled and has an EDSS of 6.5 and is probably 12-24 months off needing a wheelchair. Any thinking, compassionate, person should know that Susan is not going be able to find and do any meaningful work; not at this stage of her MS.

Before her benefits were cut Susan was able to afford to travel and visit her daughter and two grandchildren in the Midlands every month. This visit was Susan’s highlight of the month. Susan can’t afford the train fare anymore. Susan rarely goes out anymore and is becoming increasingly isolated. Not surprisingly Susan is depressed. Simply asking Susan about her typical day was enough to reduce her to tears. Susan is also being let down by the system. What Susan needs are meaningful connections and interactions; friends and family to make her feel loved and wanted. Should the neurologist’s job extend into the social domain of their patients? I would argue yes. If we are to adopt a treatment target that maximises the lifelong brain health of our patients we can’t ignore the social determinants of health, which have a massive impact of outcomes.

To help people like Susan and our other patients we are exploring several initiatives this year to try and increase the social capital of our patients. We are not sure what our social capital programme will look like, but is quite clear that we can’t simply manage the medical side of MS and ignore the social consequences of living with this disease in modern Britain.