social determinants of health – Prof G's MS Blog Archive

Is that revolver loaded?

Barts-MS rose-tinted-odometer: ★★

Are you lonely? Have you lost a loved on during COVID-19? Have you lost your job or had to reduce your income because of COVID-19? Can you make ends meet at the end of the month? Are you worried about your future? How is your relationship with your partner? Are you depressed? Anxious? Are you sleeping well? Are you drinking too much alcohol? Are you feeling guilty? Self-loathing? Failed ambitions? …..

These sorts of questions rarely come up in a standard MSology consultation because most classically trained HCPs working in a secondary or tertiary care environment haven’t been trained to deal with what we refer to as the Social Determinants of Health (SDoH). However, it is clear the SDoH have an outsized impact on health outcomes, which is likely to include MS outcomes. This is why we launched our #ThinkSocial campaign several years ago and have started several activities to see if there is anything we can do to help tackle the SDoH.

A story: Recently one of my patients chastised me for telling her off for her poor diet, which consisted mainly of bread. She lives alone, which may explain why she eats so poorly. She has marmite or jam on toast for breakfast, a sandwich for lunch and if she feels hungry another piece of toast for dinner…..

What should Prof G do to manage this patient?….. find out.

I can clearly see the cynics saying ‘focus on what you are trained to do and leave the SDoH to general practice, social care and the charitable sector’. Yes and no. Yes, it is easy to say this is not my responsibility, but when you are trying to do your best medically to improve MS outcomes only to get trumped by the SDoH it makes it look like your service is failing. Our patient population in the east end of London is one of the most deprived populations in England. When we recently analysed deprivation data from HES (hospital episode statistics) the only area worse off than us in England was Liverpool. On the other end of the scale were Cambridge and Oxford. So if we compared outcomes of the MS patient populations in Liverpool and east London and note they are doing worse than pwMS living in Oxford and Cambridge it may not have anything to do with our MS and other services, but simply represent levels of deprivation and its associated poorer outcomes.

How SDoH result in poor outcomes is likely to be due to the effects of chronic stress on the brain. Stress is a well-defined biological or physiological response of the body. Stress results in high levels of so-called stress hormones. These stress hormones have a direct and negative effect on the brain and other organ systems, which causes them to age prematurely and malfunction. Ask anyone who is stressed and they will tell they don’t feel well. Stressed people and stressed populations are more forgetful, more tired, have poorer sleep and tend to engage in unhealthy behaviours (smoking, alcohol, poor diet, sedentary) and have much higher mental health problems (depression, anxiety, addiction, suicide). In general, pwMS are more stressed and the reasons for this are not only obvious but potentially modifiable.

The main stress hormone is cortisol. Cortisol works via glucocorticoid receptors, which are found all over the body including the hippocampus, amygdala and frontal cortex, three brain regions involved in memory and emotions. Chronic stress is associated with reduced volume and malfunction of these areas. In pwMS, these areas may already be damaged from MS lesions, which increases the MS brain’s vulnerability to chronic stress. So if you want to improve MS outcomes you can’t ignore the SDoH and chronic stress. Do you agree?

This is why I have been promoting the marginal gains philosophy to the management of MS, which is based on Sir David Brailsford approach to competitive cycling and is the reason why the British cycling teams has been so dominant in the last two decades.

“The whole principle came from the idea that if you broke down everything you could think of that goes into riding a bike, and then improved it by 1%, you will get a significant increase when you put them all together.”

Sir David Brailsford

“If we break down everything we can think of that goes into improving MS outcomes, and then improving each one by 1%, we will get a significant increase when we put them all together.”

Prof. Gavin Giovannoni

So when we launched our ‘no patient left behind’ motto at the first MS Academy ‘Raising-the-Bar’ meeting to address variation and inequalities in access to MS healthcare in the UK we included a workstream to tackle the SDoH. How we do this is currently being defined, but we have an ambitious programme of work. Whatever happens, we will need to involve the whole MS community, which includes readers of this blog. So if you have any ideas to tackle the SDoH please share them with us.

Lupien et al. The effects of chronic stress on the human brain: from neurotoxicity, to vulnerability, to opportunity. Frontiers in Neuroendocrinology April 2018, 49:91-105.

For the last five decades, science has managed to delineate the mechanisms by which stress hormones can impact on the human brain. Receptors for glucocorticoids are found in the hippocampus, amygdala and frontal cortex, three brain regions involved in memory processing and emotional regulation. Studies have shown that chronic exposure to stress is associated with reduced volume of the hippocampus and that chronic stress can modulate volumes of both the amygdala and frontal cortex, suggesting neurotoxic effects of stress hormones on the brain. Yet, other studies report that exposure to early adversity and/or familial/social stressors can increase vulnerability to stress in adulthood. Models have been recently developed to describe the roles that neurotoxic and vulnerability effects can have on the developing brain. These models suggest that developing early stress interventions could potentially counteract the effects of chronic stress on the brain and results going along with this hypothesis are summarized.

CoI: multiple

Twitter: @gavinGiovannoni Medium: @gavin_24211

MS and the Inverse Care Law at 50

Barts-MS rose-tinted-odometer: ★

Variation in access to good medical care and better outcomes has never been higher in high-income countries such as the UK. Variation is simply a euphemism for inequality. The MS community in the UK realised this a few years ago, which prompted us to launch our ‘Raising the Bar’ initiative to address inequality in access to healthcare for people with MS living in the UK.

With this as a backdrop, it is worth reflecting on the 50th anniversary of the publication of Julian Tudor Hart’s paper “The Inverse Care Law”, which was published in The Lancet on the 27th Februrary 1971. The article opens with the following lines:

“The availability of good medical care tends to vary with the need for it in the population served. This inverse care law operates more completely where medical care is most exposed to market forces, and less so where such exposure is reduced.”

The Lancet is celebrating the 50th anniversary of the publication of Hart’s seminal paper with a hard-hitting editorial, which I would urge you to read.

Editorial. 50 years of the inverse care law. Lancet 27th Feb 2021.

Excerpts:

…. Globally, letting market forces dictate health care is still a major contributor to inequity—private health care can only be accessed by those who can afford to pay.

….. In many countries, social care and long-term care are managed by private providers too.

….. Although health care is widely endorsed as a basic human right, the systems that provide it inequitably embody capitalism at its worst, where the wealthy benefit, leaving behind those most in need.

What are we trying to do with our ‘Raising the Bar’ initiative? We simply want no patient with MS to left behind. Our programme of activities has coalesced around five main workstreams.

(1) The ‘Data & Audit’ workstream is focusing on measuring the wide variation in MS services in the UK. We hope the data will then be used as a catalyst for change, i.e. new business cases for service development.

(2) The ‘Patients as partners’ workstream is the improve health literacy amongst pwMS;p to help them navigate the NHS. There is compelling data showing that people with chronic disease who are engaged with their disease and its management do better, both in terms of health outcomes and improved quality of life. Similarly, when it comes to self-monitoring, self-management and behavioural interventions, which will be essential to transform MS outcomes we will need pwMS to become true partners in raising the bar.

(3) The ‘Wellness, lifestyle & social determinants of health’ workstream is promoting the holistic management of MS. This workstream focuses on wellness and lifestyle interventions to maximise brain and physical health. This workstream is also working on ways the MS community can address the social determinants that dominate health outcome in other disease areas; we are sure it is no different in MS.

(4) We acknowledge that if we want no patient to be left behind we are going to need a new generation of leaders; people with the vision, energy and drive to make the changes necessary to make our MS services equitable and valuable. This is why we have launched a ‘leadership programme’ to provide HCPs working in MS with the necessary leadership skills. Yes, not everybody is born a leader. Effective leadership skills need to be learnt.

(5) Finally, we have a workstream that addresses UK infrastructure such as ‘national registers and research’ studies that will provide the evidence base to change or implement new practices across the country.

So if you are a healthcare professional working in MS you need to please join the MS Academy and become a part of our raising the bar initiative. With the waning of the COVID-19 pandemic the NHS promises to be more responsive to innovation, more inclusive and wants to address both inequality and it causes. I think there is no better time than now to make a difference.

If you want to hear more about what we are trying to do please log into the MS Trust’s virtual conference. In the Q&A session tomorrow afternoon we will be addressing many of these issues.

The following are my discussion points for my brief 10-minute introduction.

CoI: multiple

Twitter: @gavinGiovannoni Medium: @gavin_24211

#MSCOVID19 Boris Johnson is obese

Obesity has taken centre stage after Boris Johnson admitted that his recent coronavirus scare may have been related to his obesity. He is now pledging to do something about it. His sudden interest in the UK’s obesity problem is getting a lot of ink space in both the tabloids & broadsheets and airtime on radio & TV. Andrew Marr even covered it this morning on his BBC talk show. Will anything become of it?

A few weeks ago when I was on the medical wards there was a social media shit storm when Krispy Kreme doughnuts pledged to give NHS staff free doughnuts and dropped off a free delivery to the Royal Free staff. The issue, raised by many critics, is that Krispy Kreme (big business) and doughnuts (ultra-processed foods) represent the problem with our food environment.

Yes, we have a massive problem in the UK. Well over 50% of calories consumed in the UK are from ultra-processed foods (see study below), which are produced by the large food companies. These foods increase dramatically the amount of free sugar we consume and hence drive up insulin levels and over time it causes the cascade that leads to obesity, impaired glucose tolerance, insulin resistance and the metabolic syndrome.

What needs to be considered is that the consumption of ultra-processed foods and the associated obesity epidemic are a core component of the social determinants of health (SDoH). For Boris Johnson to address obesity from a political perspective he is going to have tackled a much wider set of social issues. Is he up to it? I doubt it. However, I am hopeful that the COVID-19 epidemic, his near-death experience and resulting social consequences of the lock-down will give him the necessary motivation to support a ‘nanny state’ that he as always so despised in the past.

Historians have been pointing out that it often takes an international crisis to bring people together for the common good and to make them realise that we are all in it together. A good example is the NHS; it was created in response to the sense of togetherness induced by the national response to the second world war. I suspect the same thing will happen post-COVID-19. It is predicted that all politicians will move left and more money and resources will be lavished on social spending. Let’s hope this reduces inequality, improves education and the lived environment and tackles our reliance on cheap processed and ultra-processed food. The consequences could be slimming down of the national waistlines and a healthier nation.

How is this relevant to MS? Getting ready for having COVID-19, which may be just around the corner for many of us, is maximising our chances of not getting the severe form of the disease. To do this you may have to improve your lifestyle and get all your comorbidities treated and under control. For some of us this may be shedding a few pounds. I am aware that this is easier said than done, which is why I would recommend you consider trying intermittent fasting or a low carbohydrate diet. The good thing about these two diet options is that they may have additional benefits for your MS.

Fernanda Rauber et al. Ultra-Processed Food Consumption and Chronic Non-Communicable Diseases-Related Dietary Nutrient Profile in the UK (2008⁻2014). Nutrients. 2018 May 9;10(5):587.

We described the contribution of ultra-processed foods in the U.K. diet and its association with the overall dietary content of nutrients known to affect the risk of chronic non-communicable diseases (NCDs). Cross-sectional data from the U.K. National Diet and Nutrition Survey (2008⁻2014) were analysed. Food items collected using a four-day food diary were classified according to the NOVA system. The average energy intake was 1764 kcal/day, with 30.1% of calories coming from unprocessed or minimally processed foods, 4.2% from culinary ingredients, 8.8% from processed foods, and 56.8% from ultra-processed foods. As the ultra-processed food consumption increased, the dietary content of carbohydrates, free sugars, total fats, saturated fats, and sodium increased significantly while the content of protein, fibre, and potassium decreased. Increased ultra-processed food consumption had a remarkable effect on average content of free sugars, which increased from 9.9% to 15.4% of total energy from the first to the last quintile. The prevalence of people exceeding the upper limits recommended for free sugars and sodium increased by 85% and 55%, respectively, from the lowest to the highest ultra-processed food quintile. Decreasing the dietary share of ultra-processed foods may substantially improve the nutritional quality of diets and contribute to the prevention of diet-related NCDs.

CoI: multiple

#MSCOVID19: inequality

We all focus on the obvious risk factors that predict who will and who won’t die of severe COVID-19, but the one that needs a deep think is deprivation the main social determinant of health. The latest data that has just been released from the ONS (Office for National Statistics) is a grim reminder that survival during COVID-19 is not only dependent on physical factors but social factors as well. In reality, the physical and the social are inseparable from each other because they depend on each other, for example, living in a poor area often means poor access to outdoor areas that promote physical activity. If you are interested in reading more on this I would suggest reading Micheal Marmot’s book ‘The Health Gap: The Challenge of an Unequal World‘.

I work at the Royal London Hospital, where our local patch consists of three boroughs Whitechapel, Hackney and Newham. It was quite alarming that Newham had the highest age-standardised COVID-19 rate with 144.3 deaths per 100,000 population followed by Brent with a rate of 141.5 deaths per 100,000 population and Hackney was third with a rate of 127.4 deaths per 100,000 population.

The following are the headline figures from the ONS:

Between 1 March and 17 April 2020, there were 90,232 deaths occurring in England and Wales that were registered by 18 April; 20,283 of these deaths involved the coronavirus (COVID-19).
When adjusting for size and age structure of the population, there were 36.2 deaths involving COVID-19 per 100,000 people in England and Wales.
London had the highest age-standardised mortality rate with 85.7 deaths per 100,000 persons involving COVID-19; this was statistically significantly higher than any other region and almost double the next highest rate.
The local authorities with the highest age-standardised mortality rates for deaths involving COVID-19 were all London Boroughs; Newham had the highest age-standardised rate with 144.3 deaths per 100,000 population followed by Brent with a rate of 141.5 deaths per 100,000 population and Hackney with a rate of 127.4 deaths per 100,000 population.
The age-standardised mortality rate of deaths involving COVID-19 in the most deprived areas of England was 55.1 deaths per 100,000 population compared with 25.3 deaths per 100,000 population in the least deprived areas
In Wales, the most deprived areas had a mortality rate for deaths involving COVID-19 of 44.6 deaths per 100,000 population, almost twice as high as the least deprived area of 23.2 deaths per 100,000 population.

On average the most deprived areas of the country had more than double the death rate than people in the least deprived areas. In the MS Academy webinar on Wednesday on ‘Preparing to get COVID-19’, I said there was nothing you could do about poverty or your level of deprivation in the short term, but maybe this is the wrong attitude to have. Although inequality is political and something the government needs to challenge with legislation there are lots of things we as individuals can do to tackle the problem.

To tackle inequality and its effect we need to start locally. Be mindful of its presence and how it impacts on health. Try to invest in local community projects and make everyone feel part of a community. It is remarkable to see how this is happening on such a large scale across the country in response to COVID-19. We need to make sure it continues post-COVID-19. We now realise the value of community that goes beyond the GDP of the country. Community and looking after each other and the health benefits of doing so are much more valuable than GDP.

As part of our ‘Raising the Bar‘ initiative, I am co-leading the workstream with Dr Helen Ford (Leeds) on the Social Determinants of Health and how they impact on the treatment and outcomes for pwMS. Our motto is that ‘no patient with MS should be left behind’. We have some interesting ideas that we are exploring with the wider MS community and would appreciate any input and help from you. The one that worries me the most at the moment is food security. We know that many pwMS in the UK are poor and many have problems paying for food and that the COVID-19 epidemic has exacerbated this. So if you know someone in your community with MS who is vulnerable please drop them a line and simply ask is there anything you can do to help. A friendly voice or helping with a food parcel delivery from the local food bank may be all that is required.

We have a grant application being processed at the moment to try and get an online platform set-up to help pwMS, who are part of Barts-MS, connect in a meaningful and helpful way. When I look at the statistics of COVID-19 from our local Burroughs we need this to happen sooner rather than later.

When the dust settles post-COVID-19 I suspect that high-income countries with the greatest inequality will have the highest per capita death rates. At the moment it looks like the US and the UK are heading for the top of the leaderboard and it comes as no surprise that the US and UK have relatively high Gini* indices compared to other high-income countries.

Some pundits argue that the relatively poor response of the UK and US to COVID-19 has more do with our slow response and preparation, despite knowing that a SARS pandemic was likely in the near future. Others argue is that it relates to our partisan political systems and that other democratic system, for example in most of Europe, make for less combative politics and a more common-sense consensus that is responsive to the needs of the people rather than vested interest groups. Whatever the reason or reasons for the lacklustre response of the UK compared to other European countries to COVID-19 we are going to have to make sure we become a more compassionate society post-COVID-19 and aspire to be a more inclusive society. Do you agree?

* The Gini index or coefficient is a measure of the income or wealth distribution of a nation’s people and is the most commonly used measurement of inequality. A Gini index of zero is perfect equality where everyone has the same income. A Gini index of one (or 100%) represents maximal inequality where only one person has all the income or consumption, and all others have none.

CoI: none

#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.