Social determinants of health and multiple sclerosis

Although doctors may be aware of their patients’ struggles with multiple sclerosis, it is rare that the social determinants of health are considered or comprehensively assessed in routine practice to identify areas of concern.

Social determinants of health (SDoH), the conditions under which we are born, grow, live, work and age, are non-medical factors that threaten, promote or protect health. These factors include education, employment, housing, access to affordable health care, and social inclusion, among others. The World Health Organization (WHO) estimates that SDoH can account for up to 55% of health outcomes and explain many health inequities (unfair and avoidable differences in health). Despite the convincing evidence about SDoH, clinicians such as neurologists do not have systematic, evidence-based tools to screen for SDoH in their routine practice nor the integrated systems to address the impact of SDoH and provide person-centred solutions.

MS in Australia

There are more than 33 300 people with multiple sclerosis (MS) in Australia, with increasing prevalence in the past four years. Many are diagnosed at a young age (20–40 years) and therefore live with MS for many decades. A recent MJA InSight+ article discussed the many advancements in treatments for MS, yet there is no cure. Our recent review in Nature Reviews Neurology considered the role of a range of SDoH on the health outcomes and the management of MS. Below, we summarise how SDoH may affect health outcomes for people with MS in the Australian context and outline suggestions to better support patients.

MS increasingly disproportionately affects women — approximately 75% of people with MS in Australia are women. Sex affects health outcomes and health care in Australia, with some evidence showing women more commonly face diagnostic delays, failure to investigate symptoms, and less aggressive treatments. Sexual and gender minorities with MS have been poorly studied, but Australian research shows that sexual orientation can have impact on health outcomes as well as access to health care. A position statement from the Australian Medical Association outlines strategies to improve these inequities.

Race and ethnicity factors

Race and ethnicity are factors that may have an impact on health outcomes in MS. First, people with MS from non-European ancestry are systematically under-represented in MS research, leading to suboptimal treatment. Second, systemic racism, which we argue also exists in the Australian health care system (here and here), has consequences for access, quality and timeliness of health care. These issues may lead to delays in diagnosis, early treatment, and/or quality of care — and time matters for brain health in people with MS. The prevalence of MS among Indigenous people in Australia appears low but we may not have a complete picture, as some communities may not have good access to specialist care, including diagnostic tests. Of note, emerging evidence shows that the prevalence of MS among many black Americans is much higher than previously understood, with more severe symptoms and faster disability progression. Researchers in the United States have created resources to encourage clinicians to include more people of minority groups in MS studies to improve our understanding of MS risk, presentation, response to treatments, and health outcomes for all people with MS.

Education level, underemployment and low socio-economic status are all interlinked and associated with worse disease outcomes (eg, faster MS disease progression). It is difficult to dissect the direct and indirect contributions of these factors; some may have impact through other SDoH (eg, access to health care) or health risk factors for disease outcomes (eg, smoking or obesity). Conversely, MS commonly has a negative impact on employment and income, health care costs, and socio-economic status. This can further decrease mental and physical health, hence creating a negative feedback loop that may have a significant impact on people’s wellbeing. Australian data showed that employment programs and reasonable adjustments to the workplace assisted with maintaining employment, yet 52% of people with MS report missed work opportunities.

The financial expense of MS

MS is expensive for an individual: in 2021 Australians with MS were on average $9063 out-of-pocket for costs directly linked to their MS. Optimal medical MS care involves early treatment and multidisciplinary care (ie, MS nursing, allied health) with regular reviews, ideally with a neurologist who is specialised in MS. In Australia, this means that public (free) neurology or MS clinics are generally best suited to provide comprehensive medical MS care. In some locations, access to public care can be fragmented or non-existent. For instance, an analysis of MS health and social services in the Australian Capital Territory in 2021 found that only five of the 16 organisations identified provided public (free) services. For the other 11 services, patients pay out-of-pocket fees, with potentially some of the costs covered through private health insurance. Although access to MS nursing services was associated with better health outcomes, 31.5% of people with MS in Australia do not have access to an MS nurse.

Access to quality health care also includes preventive care and screening. The prevalence of comorbid conditions is higher in people with MS. Poorly managed comorbid conditions adversely affect a broad range of outcomes. MS-related disability may prevent people from receiving preventive screening, including timely cancer screening. Improving access to affordable and timely health care may be achieved by routinely assessing patients’ barriers to accessing services and supporting patients to use chronic disease management services, and to navigate local, affordable and community-based programs and services. MS Australia and other organisations are advocating for improved access to public services for people with MS, in particular in rural and remote areas.

The role of the NDIS

Extending beyond medical care, the National Disability Insurance Scheme (NDIS) supports people with disability to access and participate in community, and aged care services support people aged over 65 years. The NDIS supports about 5500 people with MS-related disability. A substantial unmet need exists in equitable access to the services that people with a chronic condition require where the eligibility criteria for disability support or aged care services are not met.

Physical and emotional safety and financial security can also affect health outcomes for people with MS. Interpersonal relationshipsfrequently change after an MS diagnosis, leading to requirements for social role adjustments, carer burden and impact on family functioning. People with MS commonly experience social exclusion, loneliness and isolation, all associated with poorer mental and overall health outcomes. Data from the United States show that most people with MS who rely on an unpaid caregiver experienced abuse and or neglect (psychological abuse, 44.2%; financial abuse, 25.2%; neglect, 16.5%; physical abuse, 11.2%; or sexual abuse, 8.3%). Australian data on violence and abuse experienced by people with disability paint a similar disturbing picture, but data on Australians with MS are lacking. Especially for people with MS who rely on a partner or carer for activities of daily living, it can be more difficult to seek support. Clinicians should be aware of this increased risk, routinely assess the safety of their patients, and have knowledge on what actions to take if there is a concern (see suggestion below).

Conclusion

Many doctors are aware of some of their patients’ struggles, but it is rare that SDoH are comprehensively assessed in routine practice to identify actual or potential areas of concern. As a starting point, in our review, we suggested a brief six-item screening tool (Box 1). Screening needs to be done with sensitivity, cultural competence, and must have associated interventions or referral pathways (Box 2); otherwise, it may do more harm than good. To effectively mitigate the impact of SDoH on health outcomes for people with MS, we need a comprehensive, coordinated person-centred approach that integrates care across health and social services.

Associate Professor Claudia H Marck is a Principal Research Fellow at the Disability and Health Unit at the Melbourne School of Population and Global Health at the University of Melbourne, and is an MS Australia Fellow.

Ms Jodi Haartsen is the Executive Manager, Client Engagement and Wellbeing at MS Plus, and has worked as an MS Nurse Practitioner for many years.

Professor Anne M Kavanagh is Head of the Disability and Health Unit at the Melbourne School of Population and Global Health at the University of Melbourne, and a person with MS.

Professor Tomas Kalincik is a neurologist, director of the Neuroimmunology Centre at the Royal Melbourne Hospital, and head of the Clinical Outcomes Research (CORe) Unit at the University of Melbourne.

Associate Professor Yvonne C Learmonth is a physiotherapist, lecturer and researcher in the School of Allied Health, Murdoch University, and is an MS Australia Fellow.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated. 

The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.  

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