Good multiple sclerosis (MS) care and how to get there in Canada: Perspectives of Canadian healthcare providers working with persons with MS.

Objective: The literature that has examined healthcare access and needs of the multiple sclerosis (MS) population is limited. Currently, no research has engaged healthcare providers delivering services to this population to examine their perspectives on the provision of MS care in Canada. We aimed to summarize what good MS care should look like according to Canadian healthcare providers working with people with MS, and to identify the supports and resources required, within their care setting, to enable this standard of care. Methods: A qualitative descriptive approach was taken to analyze data from participants who responded to additional open-ended survey questions, within a larger "MS Models of Care Survey" targeting Canadian healthcare providers working with persons with MS. Results: Currently, a gap exists between what healthcare providers working with persons with MS believe MS care should encompass and what they are able to offer. Participants emphasized that their MS clinics are currently understaffed and patient-to-provider ratios are high, leaving very little time to address the array of healthcare concerns their patients present with. The healthcare providers overwhelmingly described that moving toward multidisciplinary team-based MS care that includes appropriate numbers of MS-trained neurologists, nurses, physiotherapists, occupational therapists, and mental health providers working within one location would be their prioritized approach to comprehensively managing MS care. This model of care enables all professionals to effectively coordinate care and use their time efficiently by only focusing on their area of expertise, all while meeting the needs of their patient in one setting, reducing wait-times and improving overall care. Conclusion: To meet the care needs of Canadians with MS, the healthcare system must consider standardizing and funding multidisciplinary team-based MS clinics, comparable to Stroke units, which continue to show favorable health outcomes after years of implementation.

Models of Care in Multiple Sclerosis: A Survey of Canadian Health Providers.

Objective: Little 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. Methods: We 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. Results: Of 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. Conclusion: Canadian 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.

Prioritizing the healthcare access concerns of Canadians with MS.

BACKGROUND: Canadians with MS are high users of healthcare services, yet they report multiple unmet needs, high disease burden, and low satisfaction with care. Engaging patients in healthcare planning can lead to improvements in access and care. There is currently limited evidence that has harnessed the perspectives of Canadians with MS. OBJECTIVE: To identify and prioritize the healthcare access concerns of Canadians with MS. METHODS: A cross-sectional online survey informed by the Concerns Report Methodology was used to address the objective. Participants were recruited through multiple methods. Descriptive statistics were used to identify the main barriers to healthcare providers, and concerns report methods were used to calculate needs indexes to prioritize concerns of participants. RESULTS: 324 Canadians with MS participated in the study between November 18, 2019 and March 27, 2020. The most pressing healthcare access concerns of Canadians with MS were related to availability of healthcare providers with MS knowledge and affordability of services that aim to improve wellness. CONCLUSION: These findings provide healthcare planners with prioritized access concerns of Canadians with MS, which can be used to guide strategic planning to improve the quality of life of these individuals.

Healthcare access experiences of persons with MS explored through the Candidacy Framework.

Canada has one of the highest rates of multiple sclerosis (MS) in the world, affecting 1 in every 385 individuals. This neurodegenerative condition is unpredictable and variable in symptom profile and disease course making it difficult to manage. Canadians with MS are high users of healthcare services; however, they report multiple unmet needs, high disease burden, and low satisfaction with healthcare. Access to healthcare is vital to health maintenance and may explain these poor experiences. Access is often measured using utilisation as a proxy, which may fail to capture the complexities of access experiences that this population faces. The Candidacy Framework offers an alternative to utilisation measures, by examining the process of accessing care, while considering the impact of social patterning and health system environments on this process. The aim of the current study is to align the experiences of persons with MS in accessing healthcare services with the stages of the Candidacy Framework. Forty-eight individuals with MS living across Ontario were recruited to participate in one of five focus groups or ten individual interviews. Analysis included a first inductive phase, using constant comparative methods, followed by a deductive phase, using content analysis. The Candidacy Framework was not able to capture all experiences shared by persons with MS, including patient-centred care, past experiences and outcome expectation, and care outcomes. We propose these concepts be included as refinements to the current Framework, providing a more thorough explanation of the experiences of persons with MS in accessing care to manage their condition.

Is it worth it?: The experiences of persons with multiple sclerosis as they access health care to manage their condition.

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.

A Scoping Review of Modifiable Risk Factors in Pediatric Onset Multiple Sclerosis: Building for the Future.

Knowledge of the effect of modifiable lifestyle factors in the pediatric multiple sclerosis (MS) population is limited. We therefore conducted a scoping review, following the framework provided by Arksey and O'Malley. Four databases were searched for pediatric MS and modifiable lifestyle factors using index terms and keywords, from inception to May 2018. All quantitative and qualitative primary articles were included and limited to English and full text. Of the 7202 articles identified and screened, 25 full-text articles were relevant to our objective and were included. These articles focused on diet obesity, physical activity, and sleep. In cross-sectional analyses, these lifestyle factors were associated with increased risk of pediatric onset MS (POMS), and increased disease activity. Diet, particularly vitamin D and vegetable intake, was associated with reduced relapse rate. Obesity was linked to increased risk of POMS, and physical activity was associated with reduced relapse rate and sleep/rest fatigue. Thus, available studies of lifestyle related outcomes in pediatric MS suggest specific lifestyle related factors, including obesity, higher vitamin D levels, and higher physical activity may associate with lower disease burden in POMS. Studies reviewed are limited by their observational designs. Future studies with longitudinal and experimental designs may further clarify the role of modifiable lifestyle factors in this population.

The Experience of Persons With Multiple Sclerosis Using MS INFoRm: An Interactive Fatigue Management Resource.

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.

A pilot mixed-methods evaluation of MS INFoRm: a self-directed fatigue management resource for individuals with multiple sclerosis.

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.

Exercise interventions in multiple sclerosis rehabilitation need better reporting on comorbidities: a systematic scoping review.

OBJECTIVE: To identify the extent to which exercise intervention studies in multiple sclerosis rehabilitation are addressing comorbidities and if researchers consider comorbidities as possible moderators or mediators of exercise outcomes. METHODS: Five databases were searched from inception to January 8, 2016, for exercise-related terms in combination with multiple sclerosis. Studies were screened and limited to randomized control trials, full text, and English language. We assessed whether comorbidities were excluded or included, how they were reported and described, and if they were examined as possible moderators or mediators of exercise outcomes. RESULTS: We reviewed 99 articles that included various exercise interventions, where the most common were general multi-faceted exercise training ( n=34), cardiovascular training ( n=18), progressive-resistance training ( n=12), and balance and gait training ( n=12). In total, 77 of 99 studies reported one or more comorbidities as an exclusion criterion. The most commonly excluded comorbidities were cardiovascular diseases, cognitive impairments or psychiatric disorders, and unspecified conditions or contraindications. Only nine studies reported details on excluded participants with comorbidities. Across studies that reported comorbidities of included participants ( n=8), none examined comorbidities as possible moderators or mediators of exercise outcomes. CONCLUSION: Although a variety of exercise interventions have positive outcomes, there is limited evidence that these interventions are generalizable to people with multiple sclerosis who have comorbid conditions.

Effect of Comorbidities on Outcomes of Neurorehabilitation Interventions in Multiple Sclerosis: A Scoping Review.

Background: Interest in comorbidities has increased in the past few years, but the effect of comorbidities on outcomes of multiple sclerosis (MS) neurorehabilitation interventions is unclear. The aim of this review was to identify and summarize the existing evidence regarding the effect of comorbidities on outcomes of neurorehabilitation interventions targeting people with MS. Methods: Five databases (Embase, MEDLINE through Ovid, PubMed Central, Cumulative Index to Nursing and Allied Health Literature, and Web of Science) were searched using index terms and keywords relating to MS and a wide range of rehabilitation interventions. Studies screened were limited to English-language randomized controlled trials. Information related to included and excluded comorbidities and how they were reported and described was extracted from the included studies. Results: Fifty-four neurorehabilitation randomized controlled trials were included and were grouped into categories: robotics/technology-enhanced (n = 7), task-oriented training/neurorehabilitation principles (n = 7), electrical stimulation (n = 12), temperature regulation (n = 6), magnetic field therapy (n = 5), vibration (n = 9), and miscellaneous (n = 8). Although the issue of comorbidity was considered in 40 studies, it was limited to excluding individuals from participating in the trials. Only two studies reported on comorbidity, but neither examined the possible mediating or moderating effect of comorbidities on intervention outcomes. Conclusions: This review documents important knowledge gaps about the effect of comorbidity on neurorehabilitation outcomes and identifies a critical need for future studies to address this issue. Without this information, we limit our understanding of the mechanisms of comorbidity and its effects on relevant clinical and research outcomes specific to neurorehabilitation.