Understanding and mitigating health-related disparities in MS care

Webinar objectives

• What is the evidence in the UK that ethnicity and social determinants of health affect outcomes (Dobson 2022) (Straukiene et al 2021) in people with MS?
• An understanding of how health disparities might influence approaches to the assessment, treatment and management of a person with MS
• How do we work to ensure better access to healthcare regardless of gender, race and sexual orientation?
  
• How do we consider the impact of health disparities on MS care when service planning nationally, regionally and locally

Webinar summary

People living with MS come from all backgrounds, and the social determinants of health mean they can all experience the condition differently.

MS studies almost exclusively recruit from specialised healthcare services, meaning trial cohorts do not always fully represent the general patient population, and not everyone has the same access to care, said Professor Ruth Dobson, clinical senior lecturer with the Queen Mary University of London’s Wolfson Institute of Preventive Medicine neurology unit.

Understanding health inequity

Dr Andrea Stennett, research neuro-physiotherapist at Barts MS said a health-related disparity was defined as a type of health difference that is closely linked with economic, social, or environmental disadvantage. They adversely affect groups of people who have systematically experienced greater social or economic obstacles to health, based on their racial or ethnic group, religion, socio-economic status, gender, age, mental health, cognitive sensory, physical disability, sexual orientation, gender identity, geographic location, or other characteristic historically linked to discrimination or exclusion.[1]

Health disparities, she went on, can lead to largely avoidable, unnecessary and unjust health inequalities, which, as a whole, result in health inequities.

MS affects people from different ethnicities differently. While the condition predominantly affects white individuals, Andrea said, it is more prevalent among black people than previously thought.[2] Black and Asian people tend to develop symptoms at a younger age than white people with MS, and experience a more severe disease course, with faster disability progression and more relapses.[3]

“When you look at the data collectively, what we see is that black people with MS tend to have worse MS outcomes than white people with MS. This has implications in terms of access to treatments, resource allocation, and policy decisions. It's something that we need to address,” said Andrea.

Genetics, environmental factors, bias in reporting, and delays in seeking a diagnosis or medical attention may be driving these differences in outcomes. Yet more and more literature, Andrea said, is pointing to the role of the social determinants of health.

Social determinants of health

The World Health Organization (WHO) describes social determinants of health as “the non-medical factors that influence health outcomes,” or the conditions under which people are born, grow, live, work, and age.[4] They include individual characteristics, such as gender, sexuality and race, education and skills, money and resources, housing, and friends, family and community.

“Inequalities in any of these areas can affect health outcomes, but they can overlap and interplay with each other,” said Andrea, adding that the social determinants of health account for between 30% and 55% of health outcomes.[5]

In terms of MS, for example, studies have shown that people with less than 12 years of formal education have a higher risk of reaching EDSS 6 than those with more than 12 years of formal education.[5] Worse MS outcomes have also been associated with smoking, unemployment, lower health literacy and lower socioeconomic status.[6]

Mitigation strategies

Mitigating health-related disparities in MS care requires a comprehensive, multi-layered, multi-system approach, Andrea argued.

She highlighted the Core20PLUS5 programme, an NHS-wide initiative to reduce inequalities. Working via integrated care systems (ICS), it aims to identify, and mitigate, local barriers to care for the most deprived 20% of the population and members of other excluded groups in the five key priority areas listed in the NHS Long-Term plan: asthma, diabetes, epilepsy, oral, and mental health.[7] “We can advocate and raise awareness within the ICS groups about the impact MS has and some of the healthcare disparities we see in our population,” she added.

Any mitigation approach must be evidence-led, but there is a lack of data on health-related disparities in MS from the UK. Both top down and bottom up research, that includes the lived experience of people living with MS, is needed. At a local level, teams need to find ways to monitor and review disparities.

Unmet needs

According to Shift.MS, more than half of people diagnosed with MS have felt isolated by the condition, and such feelings can be compounded by belonging to a marginalised or minority group. “You will be less likely to find people who you can relate to and more likely to feel alone,” said Rob Sloan, service designer at the peer support platform, adding that some people can feel like “a minority within a minority”.

Disability and living in a rural area can also contribute to feelings of isolation, he went on. A recent Shift.MS survey reported that 51% of respondents found it challenging to travel, because of their MS symptoms and/or related disability, and that 24% said they lived too far away from their MS centre to get to appointments easily. “Your location has an incredible impact on the level of care you have access to,” said Rob.

As part of the organisation’s attempts to combat isolation among people with MS, it offers a service which matches newly diagnosed members with a more experienced “buddy” for six months. Rob said: “This has been something of a learning experience for us. To start with, we were partnering people based on their time from diagnosis and the country they were based in. Now, we try to connect people based on locality as much as possible, to build meaningful connections and increase the chances of longer term engagement in peer support, health services, and self-management.”

Moving on to talk about mental health, Rob said people with MS are two to five times more likely to develop mental health problems, such as depression and anxiety, than those without the condition.[6] Men can be particularly vulnerable. In the general population, UK Government figures show they are three times more to die from suicide than women, yet they account for just 36% of referrals for NHS talking therapies.[8]

PPE for the Mind, a Shift.MS programme launched during the COVID-19 pandemic, has adapted a digital acceptance and commitment therapy (ACT) course to MS. The work was driven by a collaborative group of platform members, and included a series of podcasts and videos. This ensured the resource was useful and feasible, and was able to help address men with MS’ unmet mental health needs.

Rob said the concept of “extremes and mainstreams” was a driving service design factor at Shift.MS, and that this could also be applied to healthcare services. “I would encourage people to ensure they are talking to people at both ends of the spectrum so that the services that are delivered are for everyone,” he said.

References

[1] Office of Disease Prevention and Health Promotion. Healthy People 2020. (2023). Available at: https://health.gov/our-work/national-health-initiatives/healthy-people/healthy-people-2020#:~:text=Healthy%20People%202020%20set%20overarching,promote%20good%20health%20for%20all Last accessed: 12 October 2023

[2] Langer-Gould, A. M., Gonzales, E. G., Smith, J. B., Li, B. H., & Nelson, L. M. (2022). Racial and ethnic disparities in multiple sclerosis prevalence. Neurology, 98(18), e1818-e1827.

[3] Amezcua, L., & McCauley, J. L. (2020). Race and ethnicity on MS presentation and disease course. Multiple Sclerosis Journal, 26(5), 561-567.

[4] WHO. Social determinants of health. (n.d.) Available at: https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1 Last accessed: 12 October 2023.

[5] D'hooghe, M. B., Haentjens, P., Van Remoortel, A., De Keyser, J., & Nagels, G. (2016). Self‐reported levels of education and disability progression in multiple sclerosis. Acta Neurologica Scandinavica, 134(6), 414-419.

[6] NHS England. Core20PLUS5 (adults) – an approach to reducing healthcare inequalities. (n.d.) Available at: https://www.england.nhs.uk/about/equality/equality-hub/national-healthcare-inequalities-improvement-programme/core20plus5/ Last accessed: 12 October 2023.

[7] Patten, S. B., Marrie, R. A., & Carta, M. G. (2017). Depression in multiple sclerosis. International Review of Psychiatry, 29(5), 463-472.

[8] Men and mental health. Mental Health Foundation. (2021). Available at: https://www.mentalhealth.org.uk/explore-mental-health/a-z-topics/men-and-mental-health Last accessed: 12 October 2023.