A comprehensive and multidisciplinary approach are essential in providing the best care to patients with multiple sclerosis due to the complex challenges that can arise. And even though there have been significant advances in treatment and understanding the disease pathophysiology, patients with MS can still experience reduced life expectancy and quality of life. In light of ACTRIMS Forum 2024, dive into more on MS healthcare barriers.
Living with multiple sclerosis (MS) can be profoundly challenging, as it encompasses a wide range of symptoms and disabilities that can significantly impact an individual's quality of life. MS presents a host of physical, emotional, and social challenges, along with a myriad of unmet needs that’s affecting millions of patients worldwide. Despite significant advances in understanding the disease pathophysiology and treatment options, patients with MS continue to experience disease progression and symptom exacerbation leading to significant disability and reduced life expectancy and quality of life.
Social Determinants of Health
These disparities are multifactorial in nature, stemming from structural inequities in healthcare delivery systems, limited access to healthcare resources, cultural and linguistic barriers, and systemic discrimination. Additionally, social determinants, such as poverty, limited access to nutritious food, inadequate housing, and lack of transportation can exacerbate health inequities and contribute to poorer health outcomes among individuals with MS. Studies have consistently demonstrated that individuals from underserved communities are disproportionately affected by delays in diagnosis, limited access and initiation of disease-modifying therapy options, higher rates of disease progression, and lacks symptom management and comprehensive support services.
Cultural Norms
Also, the unpredictable nature of MS can lead to emotional and psychological challenges further worsening the burden on patients. Often, these challenges go unaddressed due to limited patient education and education about their disease state, in conjunction with a lack of understanding of the patient’s cultural and societal beliefs about discussing and seeking support for mental wellness.
Physiological Changes
These challenges culminate at a molecular level, which as we know, translates to increases in oxidative stress, a known contributor to axonal damage and demyelination, further contributing to worsening symptoms, flare-ups, and significantly impeding optimal disease management and overall health outcomes for individuals living with MS.
Strategies to Overcome Challenges
To improve outcomes and promote health equity in MS care, it is essential to adopt a comprehensive and multidisciplinary approach that addresses the complex needs of patients. Further, individualizing approaches to each patient’s situation will require more tools, approaches, and importantly, a multidisciplinary approach. Here are some key strategies that we can incorporate into our daily practice today:
- Empower through education: Educate and empower patients, caregivers, and communities about MS, its symptoms, treatment and management options, the importance of early intervention, encouragement to ask questions, and connect with resources can help them make informed decisions and actively take part in their care.
- Practice culturally humble collaborative care: Establish multidisciplinary care teams that encompass neurologists, rehabilitation specialists, mental health professionals, and social workers who can provide holistic support that acknowledges and respects the diverse backgrounds and experiences of MS patients. This includes addressing language barriers, incorporating cultural beliefs and practices into treatment plans, and ensuring that healthcare settings are welcoming and inclusive.
- Collaborate with Community Partners: Collaborate with community organizations, patient advocacy groups, and other stakeholders to develop tailored interventions and support services that meet the unique needs of individuals with MS. Participate in community-based outreach programs that aim to build trust and relationships within communities.
- Engage in research and innovation: Continuing research into novel therapeutics, personalized treatment approaches, and biomarker discovery is essential to advancing MS care and addressing unmet needs. It’s important to include patients from diverse backgrounds to participate in clinical trials for more accurate data of patient populations.
- Advocate for Health Equity: Engage in advocacy efforts aimed at reducing health disparities to address systemic barriers to MS care, such as raising awareness about the impact of social determinants of health on MS outcomes, promoting policies that ensure equitable access to healthcare services and advocating for increased research focused on inclusion of underrepresented patient populations.
Addressing the unmet needs and health disparities of MS can help us overcome barriers, advance health equity, and improve overall outcomes for patients with MS.
REFERENCES
Dobson R, Rice DR, D’hooghe M, et al. Social determinants of health in multiple sclerosis. Nature Reviews Neurology 2022 18:12. 2022;18(12):723-734. doi:10.1038/s41582-022-00735-5
Mateen FJ, Trápaga Hacker C. Perceptions of people with multiple sclerosis on social determinants of health: Mixed methods. Mult Scler Relat Disord. 2023;80:105089. doi:10.1016/j.msard.2023.105089
Stoll S, Costello K, Newsome SD, Schmidt H, Sullivan AB, Hendin B. Insights for Healthcare Providers on Shared Decision-Making in Multiple Sclerosis: A Narrative Review. Neurol Ther. 2024;13(1):21-37. doi:10.1007/s40120-023-00573-7
Towfighi A, Berger RP, Corley AMS, Glymour MM, Manly JJ, Skolarus LE. Recommendations on Social Determinants of Health in Neurologic Disease. Neurology. 2023;101(7_Supplement_1). doi:10.1212/WNL.0000000000207562