by Steve Bryson PhD | August 5, 2021
Accessing healthcare providers knowledgeable about multiple sclerosis (MS) and being able to afford additional services to improve overall health were the most pressing healthcare concerns among Canadians with the condition, a survey suggests.
“These findings provide healthcare planners prioritized concerns and a profile of [people with MS] that have these concerns, which can be used to guide strategic planning to improve the quality of life of Canadians living with MS,” the researchers wrote.
The survey, “Prioritizing the healthcare access concerns of Canadians with MS,” was published in the Multiple Sclerosis Journal – Experimental, Translational and Clinical.
As MS is a life-long condition, patients experience a high disease burden with symptoms that include fatigue, movement and coordination difficulties, vision and cognitive impairments, and mental health problems. As such, people with MS regularly access the healthcare system in Canada.
Currently, healthcare guidelines for people with MS in Canada have been developed by researchers and expert healthcare providers. However, Canadians with MS report low satisfaction with care, difficulties accessing care, and multiple unmet needs.
Studies suggest that including MS patients in healthcare design can improve care, with better access to clinical visits and enhanced patient satisfaction and safety.
Now, researchers based at Queen’s University in Canada surveyed Canadians with MS to identify healthcare access concerns.
“This is the first Canadian study that provides a ranking of healthcare access concerns by persons living with MS,” the team wrote.
Five sections of the survey included demographics, general- and MS-related information, healthcare-seeking behaviors, healthcare use and barriers, and concerns.
A total of 324 patients completed the survey, most of whom were female (84%), diagnosed with relapsing-remitting MS (73.5%) for an average of 11 years. Most participants (62%) were receiving disease-modifying therapies (DMTs), had additional healthcare coverage beyond publicly funded Medicare (77%), and lived in large urban areas (51%).
Nearly all patients (93%) had a regular family physician, and reported an average of 4.8 visits per year, of which 32% were MS-related. The vast majority (93%) regularly visited a neurologist with 1.5 appointments per year, on average. Neurologists were identified as the primary source of MS care (67%), followed by family physicians (15%).
Participants reported a lack of access to occupational therapists (19%), physiotherapists (18%), and mental health providers (17%). The primary barrier to access was cost due to a lack of additional insurance, followed by a lack of availability and referrals. About 21% who did not have access to an occupational therapist said they did not know how to make an appointment.
Some participants (35%) said they wanted to see a neurologist more often but had difficulties with access. Getting an appointment was the primary barrier to access to a neurologist reported by 70%.