Background People with multiple sclerosis (MS) require complex care throughout life. Canadians with MS are high users of health‐care services, yet still report unmet health‐care needs and low satisfaction with services received. Objective This study aimed to investigate the health‐care access experiences of Ontarians with MS as they manage their condition. Design and Participants Interpretive description guided data collection and analysis. Forty‐eight people living across seven communities participated. Thirty‐eight participated in one of five focus groups; the remaining 10 participated in an individual semi‐structured interview. Results Participants described the experience of accessing care as a decisional process, guided by a form of cost‐benefit analysis. The process determined whether seeking conventional health‐care services ‘is worth it’. Most participants felt that the energy and resources required to access the health‐care system outweighed their expected outcomes, based on past experiences. Participants who did not see the benefit of care seeking turned to self‐treatment, use of complementary and alternative services, and engaged in patterns of health‐care avoidance until a crisis arose. Discussion and Conclusion Findings suggest that a renewed effort to promote patient‐centred care and a biopsychosocial approach may improve the health‐care access experiences of persons with MS and reduce service avoidance.

Canada has one of the highest rates of multiple sclerosis (MS) in the world, affecting 1 in every 385 individuals. An estimated 11 Canadians are diagnosed with MS every day, typically in their early adult years (Bray et al., 2014). Individuals diagnosed with MS are faced with managing a complex neurodegenerative condition with a heterogeneous disease course and an array of varying symptoms (Becker et al., 2018). Prognosis is difficult to determine, although many individuals move to a progressive form of the disease within one to two decades post-diagnosis (Confavreux & Vukusic, 2006).Due to the complexity, variability and unpredictability of MS, its management requires patient-specific approaches, as well as care from multiple healthcare providers ( Barin et al., 2019). It is no surprise

Fatigue management interventions for individuals with multiple sclerosis (MS) often feature structured programmes requiring repeated, in-person attendance that is not possible for all individuals. We sought to determine whether MS INFoRm, a self-directed fatigue management resource for individuals with MS, was worth further, more rigorous evaluation. Our indicators of worthiness were actual use of the resource by participants over 3 months, reductions in fatigue impact and increases in self-efficacy, and participant reports of changes in fatigue management knowledge and behaviours. This was a single-group, mixed-methods, before-after pilot study in individuals with MS reporting mild to moderate fatigue. Thirty-five participants were provided with MS INFoRm by a USB flash drive to use at home for 3 months, on their own volition. Twenty-three participants completed all standardized questionnaires, semi-structured interviews and study process measures. Participants reported actively using MS INFoRm over the 3-month study period (median total time spent using MS INFoRm=315 min) as well as significantly lower overall fatigue impact (Modified Fatigue Impact Scale: t=2.6, P=0.01), increased knowledge of MS fatigue (z=-2.8, P=0.01) and greater confidence in managing MS fatigue (z=-3.3, P=0.001). Individuals with significant reductions in fatigue impact also reported behavioural changes including tracking fatigue, better communication with others, greater awareness, improved quality of life and being more proactive. This study provides evidence that further rigorous evaluation of MS INFoRm, a self-directed resource for managing fatigue, is worth pursuing.

We aimed to understand participants' experiences with a self-guided fatigue management resource, Multiple Sclerosis: An Interactive Fatigue Management Resource ( MS INFoRm), and the extent to which they found its contents relevant and useful to their daily lives. We recruited 35 persons with MS experiencing mild to moderate fatigue, provided them with MS INFoRm, and then conducted semistructured interviews 3 weeks and 3 months after they received the resource. Interpretive description guided the analysis process. Findings indicate that participants' experience of using MS INFoRm could be understood as a process of change, influenced by their initial reactions to the resource. They reported experiencing a shift in knowledge, expectations, and behaviors with respect to fatigue self-management. These shifts led to multiple positive outcomes, including increased levels of self-confidence and improved quality of life. These findings suggest that MS INFoRm may have a place in the continuum of fatigue management interventions for people with MS.

ObjectiveLittle work has evaluated integrated models of care in multiple sclerosis (MS) and the composition of MS care teams across Canada is largely unknown. We aimed to gather information regarding existing models of MS care across Canada, and to assess the perceptions of health care providers (HCPs) regarding the models of care required to fully meet the needs of the person with MS.MethodsWe conducted an anonymous online survey targeting Canadian HCPs working in MS Clinics, and neurologists delivering MS care whether or not they were based in an MS Clinic. We queried the types of HCPs delivering care within formal MS Clinics, wait times for HCPs, the perceived importance of different types of HCPs for good quality care, assessments conducted, and whether clinic databases were used. We summarized survey responses using descriptive statistics.ResultsOf the 716 HCPs to whom the survey was distributed, 100 (13.9%) people responded. Of the 100 respondents, 85 (85%) indicated that their clinical practice included people with MS and responded to specific questions about clinical care. The most common types of providers within MS Clinics with integrated models of care were neurologists and MS nurses. Of 23 responding MS Clinics, 10 (43.5%) indicated that there were not enough neurologists, and 16 (69.6%) indicated that there were not enough non-neurologist HCPs to provide adequate care. More than 50% of clinics reported wait times exceeding 3 months for physiatrists, physiotherapists, psychiatrists, psychologists, neuropsychologists and urologists; in some clinics wait times for these providers exceeded 1 year. Multiple disciplines were identified as important or very important for delivering good quality MS care. Over 90% of respondents thought it was important for neurologists, nurse practitioners, MS nurses and psychiatrists to be co-located within MS Clinics.ConclusionCanadian HCPs viewed the ideal MS service as being multidisciplinary in nature and ideally integrated. Efforts are needed to improve timely access to specialized MS care in Canada, and to evaluate how outcomes are influenced by access to care.