Multiple sclerosis (MS) is a chronic, autoimmune neurodegenerative disease that the biomedical research and pharmaceutical industry has yet to find a cure for. It is a progressively debilitating condition that manifests with a number of unpredictable symptoms that can greatly reduce one’s quality of life. In order to foster well-being and a sense of independence in the patient, and to minimize frustration in disease management, a group of researchers from the University of British Columbia in Canada came up with a model for self-management. It is now published online in the International Journal of MS Care.
Lead author Setareh Ghahari, PhD, MSc, BSc from the Department of Occupational Science and Occupational Therapy at the university, explains that their Multiple Sclerosis Self-Management Scale (MSSM) is the first of its kind, in that it is multidimensional and can help MS patients monitor disease progression and likewise affect the appropriate medical, cognitive, behavioral and emotional responses to maintain quality of life. It is comprised of 24 items and 5 factors, namely: Health Care Provider Relationship/Communication, Treatment Adherence/Barriers, Social/Family Support, MS Knowledge and Information, and Health Maintenance Behavior — all measured using a Likert-type scale of 1 to 5, with higher scores equating to better self-management.
The researchers had 31 MS patients evaluate the MSSM to gain feedback on its format, nature of questions, level of comprehensiveness, and efficacy in promoting self-management. While there were a number of concerns raised by the participants of the re-testing, the researchers were similarly cognizant of the study’s limits such as sample size and randomization. Most of them were married, college-educated, and lived on a relatively high household income, which could mean they have easier access to information about their disease and have a better ability to understand it. Additionally, these patients have had MS an average of 11.8 years, so it is likely they have already developed their own means of self-management.
Another approach to enhancing independence and quality of life in MS patients is participation in a regular wellness program. Researchers from the Kessler Foundation had patients attend a weekly 90-minute program and noted improvements in patients’ mood, mental health, perceived stress, and pain.