Perspectives of Ontarians with Multiple Sclerosis on Accessing Healthcare Services for Managing their Condition

Multiple sclerosis (MS) requires complex care throughout life. Current Canadian literature demonstrates that persons with MS are high users of healthcare services, yet still have multiple unmet health care needs and low satisfaction with healthcare services received. This study investigated access to healthcare from the perspective of Ontarians with MS, using interpretive description methodology. Participants were 48 Persons with MS living across seven communities in Ontario recruited primarily through the MS Society of Canada. Data collection involved five focus groups plus ten individual semi-structured telephone interviews. Participants described access to healthcare services as a process of cost-benefit analysis that involved weighing out the likelihood of getting useful assistance against the range of expected barriers. Expected barriers were based on past experience and included a lack of patient-centered care, limited MS-related knowledge of generalists, and lack of affordability of preferred source of care. Ongoing experiences with these barriers led participants to believe that seeking care was not worth it. The result was that participants tended to avoid seeking healthcare services until they felt threatened by their health state, which then led to use of emergency services. Many participants also described completely disengaging from traditional healthcare services in favour of alternative treatments. Ontarians with MS report negative experiences with traditional healthcare services that fail to meet their complex care needs. Findings suggest that a patient-centered approach could reduce healthcare avoidance which may, in turn, reduce secondary complications and avoidable hospitalizations. (MS) requires complex care throughout life. Current Canadian literature demonstrates that persons with MS are high users of healthcare services, yet still have multiple unmet health care needs and low satisfaction with healthcare services received. This study investigated access to healthcare from the perspective of Ontarians with MS, using interpretive description methodology. Participants were 48 Persons with MS living across seven communities in Ontario recruited primarily through the MS Society of Canada. Data collection involved five focus groups plus ten individual semi-structured telephone interviews. Participants described access to healthcare services as a process of cost-benefit analysis that involved weighing out the likelihood of getting useful assistance against the range of expected barriers. Expected barriers were based on past experience and included a lack of patient-centered care, limited MS-related knowledge of generalists, and lack of affordability of preferred source of care. Ongoing experiences with these barriers led participants to believe that seeking care was not worth it. The result was that participants tended to avoid seeking healthcare services until they felt threatened by their health state, which then led to use of emergency services. Many participants also described completely disengaging from traditional healthcare services in favour of alternative treatments. Ontarians with MS report negative experiences with traditional healthcare services that fail to meet their complex care needs. Findings suggest that a patient-centered approach could reduce healthcare avoidance which may, in turn, reduce secondary complications and avoidable hospitalizations

Combining qualitative and quantitative data collection and analysis methods in understanding multiple sclerosis fatigue management

Combining qualitative inquiry with quantitative frequency data in a mixed methods research approach was valuable in understanding the strategies that people with Multiple Sclerosis (MS) used to manage their fatigue. Understanding its management is important because fatigue is often described by people with MS as their most disabling symptom and can pervade all aspects of a person’s life. This research aimed to identify how often people used particular fatigue management strategies and the factors that influenced their use in the context of daily life. The methodology was Qualitative Description with phenomenological overtones using convenience sampling, interviews with semi-structured and structured components, and frequencies combined with typology development. Thirty-one people with MS from Chicago, Ill and Brisbane, Queensland in Australia who experienced fatigue were interviewed and asked to sort 15 cards with common fatigue management strategies into 3 categories, indicating whether they used them regularly, sometimes or never. Frequency counts were used to identify the number of participants who placed a specific strategy in a particular category. Frequencies were used to develop a typology with which to code the qualitative data. The strategies placed most frequently in each category were: Plan / organize the day used regularly, Ask someone for help used sometimes, and Use mobility devices never used. Mixed methods research techniques enabled us to explore the participants’ fatigue management in greater depth. Each data type (i.e., qualitative and quantitative data) complemented the other and led to a richer understanding than either could provide in isolation

Life Skill Needs of Occupational Therapy Assistant Students: Perceptions of Instructors, Preceptors, Graduates and Current Students

Life skills are the basic skills required to function in everyday life. Occupational therapy assistant (OTA) students may struggle with life skills, and as a result experience challenges in academics and practicum. The purpose of this phase of a multiphase study was to identify the life skill needs of OTA students from multiple perspectives. This study used a pragmatic qualitative design. Students in the second year of a 2-year therapy assistant diploma program, graduates, instructors, and preceptors participated in interviews or focus groups to discuss OTA students’ life skill needs. Interviews and focus groups were recorded and transcribed. Applied thematic analysis was used to analyze the interview and focus group data and draw conclusions. Common themes were identified: contributors to student success; impact of students’ life skills on clinical encounters; and life skills training needs. These themes were identified across all participant groups. Findings suggest that OTA students with lower confidence or abilities in life skills may also have lower confidence and success in clinical encounters. Life skills training tailored to OTA students may help students develop foundational skills to enhance their confidence and competence in relevant life skill areas

Relación existente entre cambios físicos (temperatura) y químicos (PH y dureza del agua) y las concentraciones de flúor en el agua de consumo humano, en el distrito capital.

Estudio de tipo cuasi experimental que tiene como objetivo saber si existe correlación entre algunos cambios físicos y químicos a los que se somete el agua de consumo humano fluorada en la ciudad de Panamá. El universo de estudio es el agua tratada por la potabilizadora de Miraflores y la muestra utilizada es el agua potable que sale del grifo del laboratorio de investigación de la Facultad de Odontología. Las variables elegidas para el estudio fueron el ph (acidez y basicidad) temperatura y dureza del agua. Estas variables fueron manipuladas en el estudio con el propósito de conocer si existe correlación entre el aumento o disminución de estas variables en las muestras de agua potable y un aumento o disminución de flúor en dichas muestras de agua. Para las mediciones de flúor antes y después de manipuladas las muestras se utilizó el fluorímetro tipo Hanna y para cambios en el ph y temperatura se utilizó un phchímetro y un termómetro respectivamente. Se utilizó un análisis estadístico de correlación de variables y los resultados del estudio revelan que cambios en el ph y dureza del agua se correlacionan con cambios en las concentraciones de flúor en el agua potable mientras que no se observó correlación entre los cambios de temperatura a los que se sometió el agua potable y las concentraciones de flúor

Priority setting: women’s health topics in multiple sclerosis

Cancer; Multiple sclerosis; Women’s healthCàncer; Esclerosi múltiple; Salut de la donaCáncer; Esclerosis múltiple; Salud de la mujerBackground: A scoping review found that most studies on women’s health in multiple sclerosis (MS) focused on pregnancy, fetal/neonatal outcomes and sexual dysfunction. Few studies addressed menopause, contraception, gynecologic cancers/cancer screening. However, the perceived relative importance of these knowledge gaps to people living with MS and other partners is unknown. We engaged a range of partners, including people living with MS, health care providers, researchers, and patient advocacy groups, to set priorities for future research in women’s health in MS. Methods: We employed a three-step global engagement process. First, we identified which broad research topics relevant to women’s health in MS were of highest priority using two surveys. Second, we developed specific research questions within these topics using focus groups. Finally, we prioritized the research questions with a third survey. Results: Overall, 5,266 individuals responded to the initial surveys [n = 1,430 global survey, mean (SD) age 50.0 (12.6), all continents; n = 3,836 North American Research Committee on Multiple Sclerosis survey, mean (SD) age 64.8 (9.6), United States]. Menopause, sexual dysfunction, pregnancy, gynecologic cancer/cancer screening, hormones and parenthood were identified as the most important topics. Focus groups generated 80 potential research questions related to these topics. In the final survey 712 individuals prioritized these questions. The highest priority questions in each research topic were: (i) How do perimenopause and menopause affect disease activity, course, response to disease-modifying treatment and quality of life in MS; (ii) What are the most effective strategies for managing issues around sexual intimacy, including related to low sexual desire, changes in physical function, and MS symptoms; (iii) Are there long-term effects of disease-modifying therapies on the children of persons with MS; (iv) What are the short and long-term effects of disease-modifying drugs on gynecologic cancer risk, particularly for high efficacy disease-modifying drugs and hematopoietic stem cell transplantation; (v) Are there hormone related treatments that can stabilize fluctuations in MS symptoms; and (vi) How does MS fatigue impact parenting strategies. Conclusion: Priorities for research relating to women’s health issues for persons with MS have been delineated using a collaborative process with key partners. Alignment of future research with these priorities should be monitored.The author(s) declare financial support was received for the research, authorship, and/or publication of this article. The International Advisory Committee on Clinical Trials in MS is sponsored by the European Committee for Treatments and Research in MS and the National Multiple Sclerosis Society. NARCOMS is a project of the Consortium of Multiple Sclerosis Centers (CMSC). NARCOMS is funded in part by the CMSC and the Foundation of the CMSC. The study was also supported in part by the Waugh Family Chair in Multiple Sclerosis (to RM). The funding source(s) had no role in the study design, collection, analysis or interpretation of the data, nor in the decision to submit the article for publication

Do the current MS clinical course descriptors need to change and if so how? A survey of the MS community

Multiple sclerosis; Clinical course; ProgressionEsclerosis múltiple; Curso clínico; ProgresiónEsclerosi múltiple; Curs clínic; ProgressióBackground and Objectives: The current clinical course descriptors of multiple sclerosis (MS) include a combination of clinical and magnetic resonance imaging (MRI) features. Recently there has been a growing call to base these descriptors more firmly on biological mechanisms. We investigated the implications of proposing a new mechanism-driven framework for describing MS. Methods: In a web-based survey, multiple stakeholders rated the need to change current MS clinical course descriptors, the definitions of disease course and their value in clinical practice and related topics. Results: We received 502 responses across 49 countries. In all, 77% of the survey respondents supported changing the current MS clinical course descriptors. They preferred a framework that informs treatment decisions, aids the design and conduct of clinical trials, allows patients to understand their disease, and links disease mechanisms and clinical expression of disease. Clinical validation before dissemination and ease of communication to patients were rated as the most important aspects to consider when developing any new framework for describing MS. Conclusion: A majority of MS stakeholders agreed that the current MS clinical course descriptors need to change. Any change process will need to engage a wide range of affected stakeholders and be guided by foundational principles.This work and the International Advisory Committee on Clinical Trials in MS are funded by the European Committee for Treatment and Research in Multiple Sclerosis and the National Multiple Sclerosis Society

Interventions for preventing falls in people with multiple sclerosis.

This is a protocol for a Cochrane Review (Intervention). The aim of this review is to evaluate the effectiveness of interventions designed to reduce the rate of falls in people with multiple sclerosis (MS). Specific objectives include comparing the effectiveness of single, multiple and multifactorial interventions designed to reduce the rate of falls in people with MS

Enhancing diversity of clinical trial populations in multiple sclerosis

BACKGROUND: Demographic characteristics, social determinants of health (SDoH), health inequities, and health disparities substantially influence the general and disease-specific health outcomes of people with multiple sclerosis (MS). Participants in clinical trials do not represent all people with MS treated in practice. Objective: To provide recommendations for enhancing diversity and inclusion in clinical trials in MS. METHODS: We held an international workshop under the Auspices of the International Advisory Committee on Clinical Trials in MS (the “Committee”) to develop recommendations regarding diversity and inclusivity of participants of clinical trials in MS. Workshop attendees included members of the Committee as well as external participants. External participants were selected based on expertise in trials, SDoH, health equity and regulatory science, and diversity with respect to gender, race, ethnicity, and geography. RESULTS: Recommendations include use of diversity plans, community engagement and education, cultural competency training, biologically justified rather than templated eligibility criteria, adaptive designs that allow broadening of eligibility criteria over the course of a trial, and logistical and practical adjustments to reduce study participant burden. Investigators should report demographic and SDoH characteristics of participants. CONCLUSION: These recommendations provide sponsors and investigators with methods of improving diversity and inclusivity of clinical trial populations in MS

Do the current MS clinical course descriptors need to change and if so how? A survey of the MS community

BACKGROUND AND OBJECTIVES: The current clinical course descriptors of multiple sclerosis (MS) include a combination of clinical and magnetic resonance imaging (MRI) features. Recently there has been a growing call to base these descriptors more firmly on biological mechanisms. We investigated the implications of proposing a new mechanism-driven framework for describing MS. METHODS: In a web-based survey, multiple stakeholders rated the need to change current MS clinical course descriptors, the definitions of disease course and their value in clinical practice and related topics. RESULTS: We received 502 responses across 49 countries. In all, 77% of the survey respondents supported changing the current MS clinical course descriptors. They preferred a framework that informs treatment decisions, aids the design and conduct of clinical trials, allows patients to understand their disease, and links disease mechanisms and clinical expression of disease. Clinical validation before dissemination and ease of communication to patients were rated as the most important aspects to consider when developing any new framework for describing MS. CONCLUSION: A majority of MS stakeholders agreed that the current MS clinical course descriptors need to change. Any change process will need to engage a wide range of affected stakeholders and be guided by foundational principles

Adherence to behavioural interventions in multiple sclerosis: Follow-up meeting report (AD@MS-2)

After an initial meeting in 2013 that reviewed adherence to disease modifying therapy, the AD@MS group conducted a follow-up meeting in 2014 that examined adherence to behavioural interventions in MS (e.g. physical activity, diet, psychosocial interventions). Very few studies have studied adherence to behavioural interventions in MS. Outcomes beyond six months are lacking, as well as implementation work in the community. Psychological interventions need to overcome stigma and other barriers to facilitate initiation and maintenance of behaviour change. A focus group concentrated on physical activity and exercise as one major behavioural intervention domain in MS. The discussion revealed that patients are confronted with multiple challenges when attempting to regularly engage in physical activity. Highlighted needs for future research included an improved understanding of patients’ and health experts’ knowledge and attitudes towards physical activity as well as a need for longitudinal research that investigates exercise persistence