Canadian Patients Say Their Top Concern Is Access to MS Providers

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.

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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%.

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The healthcare concerns survey was grouped into provider interactions, physical accessibility and availability, accommodation, and affordability. Participants rated statements using a scale from 0, reflecting not satisfied, to 4, or very satisfied. A needs index (0–100) was calculated from these ratings.

The top-rated concern among respondents based on the needs index was healthcare providers in the community with sufficient MS-related knowledge. Patients who were more likely to report this concern were those who experienced a relapse within the past two years.

Individuals who reported this concern had higher Patient Determined Disease Steps scores — a patient-reported outcome of disability in MS. In contrast, people who said they had high confidence in seeking healthcare were less likely to report this concern, as were older patients, “which may be due to gained knowledge and confidence in care seeking over the years,” the researchers wrote.

The next rated concern was the ability to afford complementary care, including massage therapy, yoga, and chiropractic care. Female patients were more than twice as likely than males to report concern about affordable access. The odds of reporting this concern also increased with the number of MS symptoms that interfered with daily activities, but decreased with increasing age.

The third-highest concern rating was the ability to afford physiotherapy and occupational therapy to maintain health and prevent disease worsening. Participants with high numbers of co-existing health conditions were more likely to report this concern, while those with additional health insurance or those receiving DMTs were less likely to report this need.

Additional concerns included worries about coordination between healthcare providers, accessing a neurologist or specialist during a relapse, having healthcare teams at one location, affording DMTs, other symptom-related medications, medical equipment, and having an MS clinic or specialist nearby.

“The most pressing healthcare access concerns of Canadians with MS are related to lack of available healthcare providers with MS specific knowledge in their communities, as well as lack of affordability of complementary care, physiotherapy, and occupational therapy services that aim to maintain wellness and improve independence,” the researchers concluded.