Overview: People with multiple sclerosis (MS) are high users of the healthcare system and often report a number of unmet needs and barriers in accessing care. Dr. Marcia Finlayson and team set out to gather the perspectives of people living with MS to understand critical barriers in accessing specific healthcare providers and the most pressing concerns in accessing the healthcare system.
Study: A total of 324 Canadians with MS participated in the study and shared their perspectives on the greatest unmet needs in accessing healthcare. The researchers conducted a cross-sectional online survey that was informed by Concerns Report Methodology, which actively prioritized their concerns and strengths. The survey assessed several areas: healthcare provider interactions, affordability, physical accessibility, and availability and accommodation. Most of the participants in this study were female (84% female), had relapsing-remitting MS (73.5% with RRMS) and just over half indicated they live in a large urban area (51% live in an urban area). Most of the participants were taking disease-modifying therapies (62% taking DMTs), and 77% of participants had supplementary health insurance coverage.
Results: The study found that almost all participants (93% of the participants) had a family physician and a neurologist with almost 60% were receiving care at an MS clinic. Healthcare providers that the participants reported needing but did not have access to were occupational therapists (reported by 19% of participants), mental health providers (reported by 17% of participants) and physiotherapists (reported by 18% of participants). The most common barriers to seeing these providers were cost (i.e. lack of insurance) and difficulties in getting appointments (i.e. availability and lack of referrals). Participants also reported wanting to see their neurologist more often (reported by 35% of participants), but had difficulties getting appointments (reported by 70% of participants). The top three most pressing healthcare access concerns from people living with MS in Canada are: 1. the availability of healthcare providers in their community that have sufficient MS-related knowledge to guide care planning and referrals; 2. being able to afford and maintain wellness through use of complementary care (i.e. massage therapy, yoga, naturopathic and/or chiropractic care); and 3. being able to afford physiotherapy or occupational therapy to improve well-being through preventative and maintenance care.
Impact: This study highlights concerns of Canadians with MS regarding the lack of access to healthcare providers with MS-specific knowledge in their communities, and despite having a publicly-funded healthcare system, there was a lack of affordable access to complementary care and services to improve and maintain wellness. These identified needs and prioritized concerns can be used to guide healthcare system reform in order to improve the quality of life for people living with MS.
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