Multiple Sclerosis (MS)

Multiple sclerosis (MS) is a progressive neurologic disorder characterized by immune-mediated inflammation and neurodegeneration. It affects many aspects of a patient’s life and causes a multitude of symptoms such as difficulty walking, muscle rigidity, pain in the back of the eye, slurred speech, depression, and coordination problems. However, no two patients are affected in the same way, and symptoms vary from patient to patient and over time. Patient education is, therefore, key to ensure patients are aware of every aspect of their condition and are kept up to date about available and upcoming treatments.¹ 

Importance of MS Patient Education

Patient education is especially important for people living with MS due to the wide range of symptoms that the disease causes. Better knowledge about the disease can ensure both patients and primary caregivers are aware of symptoms and allow them to consult health care professionals to start treatment in a timely manner. Knowing what to expect can also reassure patients, avoid fear, and promote a positive outlook.

Patient education is also important to raise awareness about the disease among the patient’s family, friends, and society at large. This can ensure patients have support systems in place that can help them better cope with the disease.

Benefits of MS Patient Education

Research has shown that nonpharmacological interventions such as patient education programs can have positive effects on the symptoms of MS. For example, patient education programs can teach patients with MS ways to manage their symptoms such as MS-related fatigue and increase their quality of life.² Patient education programs can also support self management.³ 

A study conducted by German researchers found that the majority of patients who took part in a patient education program valued evidence-based information about the management of MS relapses and viewed the unbiased presentation of scientific uncertainty as a chance for decision autonomy.⁴ Health care professionals also took part in the study and reported that a 1-day train-the-trainer program enabled them to successfully perform the patient education program.

A 12-week patient education program on the neurophysiological effects of physical exercise (such as aerobic training, resistance training, and combined programs), exercise-induced benefits for people with MS, and risk factors led to significant improvements in the 6-minute walk test, gait velocity, timed-up-and-go-test, fatigue, and quality of life.⁵ The study also showed that the education program led to improved self-confidence among patients. 

Because MS affects many aspects of a patient’s life, it is important that patient education covers different areas of daily living.⁶ It should include information about stress reduction, nutrition, vitamins and supplements, skincare, urinary tract infections, vaccinations, and rehabilitation programs such as physiotherapy, occupational therapy, and speech therapy.

NMSS Education Programs

The National Multiple Sclerosis Society offers a wealth of patient education programs to allow people living with MS and their caregivers to have access to accurate, current, and comprehensive information about the disease.⁷

They offer many patient education program series, ranging from the “Ask an MS Expert Program Series” to the “Black MS Experience Program Series”. The society also offers webinar series, educational videos, webcasts, books, brochures about the disease, and an education program in Spanish.

Specialized programs include those on everyday matters, relationship matters, resilience and falls, and a newsletter for children with MS. “Everyday Matters” contains stories of real people facing the everyday challenges of living with MS.⁸ Relationship matters focuses on effective communication and listening skills, problem solving and conflict resolution skills, and ways to break old patterns and manage relationships proactively.⁹ Resilience addresses the physical, emotional, cognitive, psychological, and spiritual challenges of living with MS.¹⁰ Finally, the “free from falls” program contains 8 modules designed to increase patients’ knowledge about the risk factors of falls and offers strategies to reduce the risk of falls.¹¹

MS Cure Fund Programs

The MS Cure Fund is a national nonprofit organization that aims to increase awareness about MS and its symptoms, provide information to newly diagnosed patients, and raise funds for scientific and clinical research into MS. It offers a number of patient education programs to support the patient community.¹²

The content of the programs is developed by MS health care professionals and comprises information designed to improve the lives of people living with MS. The programs provide patients the opportunity to meet others living with the disease and representatives of pharmaceutical companies developing disease-modifying therapies for the disease.

Programs cover different aspects of the disease and the challenges of living with it. These include lifestyle management, access to care, relapse management and rehabilitation, switching between MS therapies, nutrition, exercise, meditation, and a specialized education program for women living with multiple sclerosis.

Knowing When Education is Needed 

Patient education programs should be presented when fatigue is not pronounced. In case the patient is experiencing cognitive impairment or other symptoms such as blurred vision, poor balance or vertigo, muscle paralysis, tingling, numbness, or bladder issues, caregivers should be involved in the program.

References

1. Treating MS. National Multiple Sclerosis Society. Accessed June 16, 2021.
2. Wendebourg MJ, Heesen C, Finlayson M, Meyer B, Pöttgen J, Köpke S. Patient education for people with multiple sclerosis-associated fatigue: A systematic review. PLoS One. Published online March 7, 2017. doi:10.1371/journal.pone.0173025
3. Feicke J, Spörhase U, Köpke S. Patient education programmes to support self-management in people with multiple sclerosis. January 2016. Accessed June 17, 2021.
4. Köpke S, Richter T, Kasper J, Mühlhauser I, Flachenecker P, Heesen C. Implementation of a patient education program on multiple sclerosis relapse management. Patient Educ Couns. 2012;86(1):91-97. doi:10.1016/j.pec.2011.03.013
5. Kersten S, Mahli M, Drosselmeyer J, et al. A pilot study of an exercise-based patient education program in people with multiple sclerosis. Mult Scler Int. Published online December 21, 2014. doi:10.1155/2014/306878 
6. Living with multiple sclerosis. UCSF Health. Accessed June 10, 2021.
7. Library & education programs. National Multiple Sclerosis Society. Accessed June 10, 2021.
8. Everyday matters. National Multiple Sclerosis Society. Accessed June 16, 2021.
9. Relationship matters. National Multiple Sclerosis Society. Accessed June 16, 2021.
10. Resilience: addressing the challenges of MS. National Multiple Sclerosis Society. Accessed June 16, 2021.
11. Free from falls. National Multiple Sclerosis Society. Accessed June 16, 2021. 
12. Patient education programs. MS Cure Fund. Accessed June 10, 2021.

Reviewed by Debjyoti Talukdar, MD, on 7/1/2021.

---

Ozge Ozkaya, MSc, PhD

Özge’s background is in research; she holds a MSc. in Molecular Genetics from the University of Leicester and a PhD. in Developmental Biology from the University of London. Özge worked as a bench scientist for six years in the field of neuroscience before embarking on a career in science communication. She worked as the research communication officer at MDUK, a UK-based charity that supports people living with muscle-wasting conditions, and then a research columnist and the managing editor of resource pages at BioNews Services before joining Rare Disease Advisor.