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Assistive technology (AT) provides persons with Multiple Sclerosis (PwMS) ability to engage in daily activities, however acquiring AT can be challenging. Understanding current state of knowledge about perspectives and use of AT by PwMS may support critical thinking about AT acquisition process. The aim of this scoping review was to map what is known about AT use by PwMS, to identify gaps in knowledge to guide future research and practice for AT matching. A scoping review of qualitative research on perspectives and use of AT by PwMS searched four databases (Medline, CINAHL, PsychNet, and Engineering Village). Papers included focused on non-institutional settings, addressed participant's feelings/perceptions/experiences, and were in English. Initial search October 2021, updated 2022 and 2023. Two reviewers conducted screening, review, and extraction, with a third resolving disagreements. Data extraction guided by the Canadian Model of Occupational Performance and Engagement, categorised AT use by productivity, self-care, and/or leisure occupations. Covidence® was used for extraction. Findings were exported into a spreadsheet to facilitate thematic analysis. Search identified 22 peer-reviewed journals and 11 consumer publications (n = 33). Most common AT was mobility devices. Primary purposes were self-care and leisure. Common use included functional mobility, transportation, personal care, household management, recreation, and socialisation. Perceptions focused on AT need, adjusting to AT, influencing factors, performance and engagement improvements, and seeking acquisition advice. Lack of research on experiences and use of AT beyond mobility equipment, and for engagement of daily activities. Evidence provides some insights for future directions and implications to support AT acquisition for PwMS.
Persons with Multiple Sclerosis use a range of assistive technologies to enable them to engage in daily life activities categorised by leisure, self-care, and productivity.Perceptions focused on their need for assistive technologies, adjusting or change experienced due to assistive technologies, experience with influential factors (funding, environment), and seeking advice.Lack of current qualitative evidence on assistive technology use by persons with Multiple Sclerosis, specifically on devices such as dictus band, raised toilet, walking poles, reminder systems and calendars, grabber, adjustable bed, virtual and voice activated assistants, tub transfer board, and home modifications for use by persons with Multiple Sclerosis.
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BACKGROUND: Resilience-promoting resources are critically needed to support positive caregiving experiences for multiple sclerosis (MS) caregivers. A digital toolkit offers a flexible way to access and use evidence-based resources that align with MS caregivers' interests and needs over time. OBJECTIVE: We explored the perspectives of key knowledge users regarding content areas, features, and other considerations to inform an MS caregiver resilience digital toolkit. METHODS: Twenty-two individuals completed a demographic survey as part of this study: 11 MS family caregivers, 7 representatives of organizations providing support services for people with MS and/or caregivers, and 4 clinicians. We conducted nine semi-structured individual interviews and two focus groups. Data were analyzed using content analysis. RESULTS: Participants recommended that a digital toolkit should include content focused on promoting MS caregivers' understanding of the disease, its trajectory and available management options, and enhancing caregiving skills and caregivers' ability to initiate and maintain behaviours to promote their own well-being. Features that allow for tracking and documenting care recipients' and caregivers' experiences, customization of engagement, and connectivity with other sources of support were also recommended. Participants suggested a digital toolkit should be delivered through an app with web browser capabilities accessible on smartphones, tablets, or laptops. They also acknowledged the need to consider how users' previous technology experiences and issues related to accessibility, usability, privacy and security could influence toolkit usage. CONCLUSION: These findings will guide future toolkit development and evaluation. More broadly, this study joins the chorus of voices calling for critical attention to the well-being of MS family caregivers.
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Caregivers , Multiple Sclerosis , Qualitative Research , Resilience, Psychological , Humans , Caregivers/psychology , Female , Male , Middle Aged , Adult , Aged , Mobile ApplicationsABSTRACT
Objective: To describe the adaptations made and to examine interrater reliability and feasibility of administering a telehealth version of the Multiple Sclerosis Functional Composite (tele-MSFC). Design: The Multiple Sclerosis Functional Composite (MSFC) is a commonly used, in-person clinical outcome assessment. It is composed of the timed 25-Foot Walk Test (T25FWT), Nine-Hole Peg Test (NHPT), and Paced Auditory Serial Addition Test (PASAT). The MSFC was adapted for videoconference administration as part of a larger clinical trial. One of the adaptations included administering a timed 12.5-Foot Walk Test (T12.5FWT) for participants who did not have adequate space in their homes for the T25FWT. Participants, examiners, and raters completed surveys online about their satisfaction and experience with tele-MSFC. Setting: Participants underwent the tele-MSFC in their homes using a laptop or smartphone while examiners scored the tele-MSFC in real-time at a remote location. Participants: Community-dwelling adults (n=61) with mild-to-moderate multiple sclerosis (MS) symptoms. Interventions: Not applicable. Main Outcome Measure: Tele-MSFC. Results: Intraclass correlation coefficients (ICC) assessed interrater reliability between the examiner and 2 independent raters who later scored a recording of the tele-MSFC. Interrater reliability was excellent (ICC>0.90) for all tests, including the T12.5FWT. Participants were highly satisfied with tele-MSFC. However, challenges included adequate space for T25FWT, technical difficulties, and safety and privacy considerations of individuals with moderate impairments who were requested to have their caregivers present during testing. Conclusion: The tele-MSFC is reliable and feasible to administer with adaptations for community-dwelling adults with mild to moderate MS symptoms. Further validation of T12.5FWT is needed.
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OBJECTIVE: To determine if the receipt of occupational performance coaching (OPC) by adults living with multiple sclerosis (MS) improves participants' satisfaction with performance in daily activities (primary outcome); improves perceived performance in daily activities, resilience, autonomy, and participation; and reduces illness intrusiveness and effect of MS (secondary outcomes). DESIGN: Two-group randomized clinical trial with a waitlist control. SETTING: Community. PARTICIPANTS: Convenience sample of adults with MS were recruited through a research registry. Eighty-three individuals were approached; 35 were assessed for eligibility and 31 were enrolled and 30 completed baseline assessment (Final sample size, N=30). Participants were English-speaking, were without serious cognitive impairment or severe depression, and were not receiving other coaching interventions. INTERVENTIONS: Six telephone sessions of OPC were delivered by a trained facilitator over 10 weeks. Initial sessions focused on goal setting, prioritization, and action planning. Subsequent sessions involved goal and action plan review, discussion of facilitators and barriers, and goal and plan refinement. MAIN OUTCOME MEASURES: Primary outcome was participants' satisfaction with performance in daily activities, as measured by the Canadian Occupational Performance Measure (COPM). Secondary outcome measures included the COPM performance rating, Connor-Davidson Resilience Scale, Impact on Participation and Autonomy Questionnaire, Adapted Illness Intrusiveness Rating Scale, and MS Impact Scale. Measures were administered by a blinded assessor at baseline, 10 weeks, and 2 months. RESULTS: Participants in the intervention and waitlist control groups were equivalent on demographic and outcome measures at baseline. At 10 weeks, the intervention group had significantly higher COPM ratings for both satisfaction (P<.001) and performance (P=.002). No other outcomes were significantly different. For the intervention group, the benefits of OPC were maintained at 2 months. CONCLUSIONS: OPC led to improved satisfaction with performance and performance in daily activities. Future research with a larger sample is needed to determine other effects and who benefits most from OPC.
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Cognitive decline is becoming more prevalent as population ages. Technology offers solutions to help people with cognitive decline age in place. A compassionate approach to care can promote engagement in technology use by older adults with cognitive decline and equitable access. This scoping review summarized research literature on approaches to design and selection of technology that could support a compassionate approach to technology use for daily functioning among adults with cognitive decline and their care partners. We used the framework of Arksey and O'Malley. Key words capturing constructs of compassion, technology, and cognitive decline were searched in CINAHL, Medline, and PsycINFO. Peer-reviewed articles about the design for or use of technology by persons with cognitive decline or their care partners were included. Two reviewers screened and extracted data. Data informing compassionate technology use were analysed thematically. Fifty-five included articles represented a variety of technologies and purposes with ethics being the predominant perspective (n = 15). Analysis identified four categories: 1) Person- and care partner-centered approach, 2) Tailoring design to abilities, 3) Tailoring selection and application, and 4) Training and support. Using study findings, we developed a framework for compassionate use of technology for people living with cognitive decline and their care partners.
Compassionate approach to technology design and selection for person with cognitive decline and their care partners involves supporting autonomy, and consideration of ethical issues and specific technology purposeA family-centered care with a strong relational component is important when selecting technology with people with cognitive declineHealthcare providers and industry representatives require training to understand and adapt their approach to meet the needs of individuals living with cognitive decline and their care partners.
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Background: Traumatic injury is one of the top public health challenges globally. Injury survivors often experience poor health and functioning and restricted participation in employment. In Ethiopia, there is a paucity of evidence about the long-term consequences of injuries, particularly about their employment outcomes and disability status. This study characterizes injury survivors by their preinjury status, injury characteristics, postinjury employment outcomes and disability status 1 year post injury. Methods: An institution-based cross-sectional study was conducted on injury survivors who received services from a large public hospital in Addis Ababa. Medical records of all emergency room patients who visited the hospital within a 3-month period were reviewed to identify those who were eligible. A structured questionnaire was completed using a telephone interview. Descriptive statistics were used to characterize the outcomes. Results: Of the 254 participants, 78% were men, 48% were young adults (age 25-39 years), 41% were injured by road traffic collision, 52% were admitted to the hospital for up to a week and only 16% received compensation for the injury. Before the injury, 87% were working in manual labor. One-year after the injury, the total return to work (RTW) rate was 59%; 61% of participants experienced some level of disability, 33% had at least one type of chronic illness and 56% reported challenges of physical stressors when attempting to RTW. Among the 150 who returned to work, 46% returned within 12 weeks, 78% to the same employer and most received support from multiple sources, including community-level institutions (88%) and families/friends (67%). Conclusion: Traumatic injury substantially impacted the employment outcomes of survivors and contributed to increased disability in Ethiopia. This study lays a foundation for future research and contributes crucial evidence for advocacy to improve injury prevention and trauma rehabilitation in low and middle-income contexts. Level of evidence: II.
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Background: 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.
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In Ontario, Canada, rising rates of caregiver distress have been the 'canary in the coal mine' for a health system out of balance with the needs of an ageing population. Community-based health and social care professionals are well placed to play an important role in the caregiver support process; however, a gap has remained in the understanding of if and how caregiver support strategies are operationalized or experienced by community service providers (CSPs). The goal of this study was to describe how CSPs interpreted policy and how those interpretations may enable their work in supporting unpaid caregivers. Using a qualitative constructionist design, we interviewed 24 participants and reviewed 92 publicly available documents. Braun and Clarke's method of thematic analysis was used for analysis strategy. Four overarching themes were identified: (1) community care as a priority, (2) sidewalk accountability, (3) creative care planning through partnerships, and (4) challenges to care delivery. We found that the importance of caregivers to the health system was reflected in organizational policy and strategy. There is an opportunity to improve health outcome for caregivers and the population alike through strong leadership and a clear shared vision. Our findings also suggested that social capital was a significant factor in enabling providers in their work, leveraging long-standing relationships, and accumulated local knowledge to implement highly creative care plans.
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BACKGROUND: Care partners provide essential care to those with multiple sclerosis (MS). Dyadic interventions promoting health behaviours have wide-reaching benefits for individuals with MS and their care partners. However, behavioural interventions to promote physical activity in patient-caregiver dyads have yet to be explored in an MS-specific context. This study examined the secondary outcomes of the "Physical Activity Together for Multiple Sclerosis (PAT-MS)" intervention, including dyadic adjustment, caregiving tasks, caregiver quality of life, coping, and MS impact in MS dyads. METHODS: A randomized controlled feasibility trial of the 12-week behavioural PAT-MS intervention. The Dyadic Adjustment Scale, Caregiving Tasks in MS Scale, Caregiver Quality of Life in MS Scale, Coping with MS Caregiving Inventory, and MS Impact Scale measured secondary outcomes of interest. Mixed-model ANOVAs were used to test changes in variables between groups (PAT-MS vs wait-list control) over time. RESULTS: 20 participants, including 10 people with MS (51.4 ± 10.1 years old; median patient-determined disease steps (PDDS) score= 4, IQR= 1.25) and 10 care partners (48.5 ± 12.1 years old) were recruited and randomized. There was no statistically significant effect of the intervention on any of the secondary outcomes (p= 0.67-1.00). However, large effect sizes and condition-by-time interaction effects indicated improvement in dyadic adjustment (d= 1.03, ηp2= 0.45), the criticism-coercion coping subscale (d= -0.93, ηp2= 0.49), and caregiving tasks (d= 1.05, ηp2= 0.52), specifically within psycho-emotional (d= 1.47, ηp2= 0.38) and socio-practical (d= 1.10, ηp2 =0.37) sub-domains of caregiving tasks after the PAT-MS intervention compared to the wait-list condition. CONCLUSION: While this pilot feasibility study was not powered based on the secondary outcomes herein, our findings indicate improvement in dyadic adjustment and emotional and social caregiving tasks, with reduced reliance on criticism-coercion coping in the PAT-MS group compared to controls following the intervention. Findings indicate that PAT-MS may improve dyadic psychosocial well-being of people with moderate-to-severe MS and their care partners, and this should be examined next in a fully-powered study.
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Adaptation, Psychological , Multiple Sclerosis , Humans , Adult , Middle Aged , Quality of Life , Feasibility Studies , Caregivers/psychology , Multiple Sclerosis/therapy , Multiple Sclerosis/psychology , ExerciseABSTRACT
The former South West Local Health Integration Network (SW LHIN) of Ontario, which is in a predominantly rural region, regularly reports the lowest rates of caregiver distress in the province. Caregivers from rural communities regularly face challenges related to the access, applicability, and availability of supports and services, This qualitative case study describes perspectives of caregiving from the region, and explores how role construction and expectations of caregivers might both mitigate distress and influence service support use. Thematic analysis identified five themes: anticipated care, gendered caring, service support assumptions, confidence in community, and the "line in the sand": care decisions for evolving needs. Using the lens of caregiver identity theory, the findings suggest that these caregivers conceptualize identity as an extension of their primary role, to include caregiving obligations and responsibilities. We also noted a steadfast confidence in community and perceived service support assumptions across the region, with no notable rural-urban divide.
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Caregivers , Humans , Ontario , Qualitative ResearchABSTRACT
Background: Many people with advanced multiple sclerosis (MS) and their care-partners do not engage in sufficient physical activity (PA) for health benefits. We developed "Physical Activity Together for MS (PAT-MS)", a 12-week dyadic behavioural intervention, to promote PA among these dyads. Herein, we evaluated the feasibility of PAT-MS before a definitive trial. Methods: A randomized controlled feasibility trial, with 1:1 allocation into the intervention or wait-list control condition. Predefined progression criteria included rates of recruitment, retention, safety, participant satisfaction and adherence. Changes in self-reported and accelerometer-measured PA were assessed at baseline and post-intervention using mixed-factor ANOVAs. Effects sizes were calculated as Cohen's d. Results: The recruitment rate (i.e., 20 participants in 10 months) was not acceptable. However, retention (80%) was acceptable. No serious adverse events were reported. There were high levels of participant satisfaction with the intervention (content (median = 6 out of 7), facilitator (median = 7 out of 7), and delivery (median = 5 out of 7)) and adherence (92% of the group sessions, 83% of the individual support calls, and 80% of the practice activities were completed). There were statistically significant time-by-condition interactions on self-reported PA, steps/day, and %wear time and minutes in sedentary behaviour, and moderate-to-vigorous PA from baseline to post-intervention in people with MS and their family care-partners. Conclusion: PAT-MS appears feasible, safe, and efficacious for PA promotion in MS dyads. We established effect size estimates to power a future definitive trial and identified necessary methodological changes to increase the efficiency of study procedures and improve the quality of the intervention. Trial registration: ClinicalTrials.gov NCT04267185; Registered February 12, 2020, https://clinicaltrials.gov/ct2/show/NCT04267185.
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Guest editor Marcia Finlayson, PhD, OT Reg (Ont), OTR, is a professor in the School of Rehabilitation Therapy at Queen's University in Ontario, Canada. She began her career as a clinical occupational therapist and shifted to a research career focused on generating and sharing knowledge to help people affected by multiple sclerosis (MS) lead healthy, meaningful lives with control over their participation in daily activities, at home and in the community, particularly as they age. For this special issue on caregiving in MS, she chose to interview Kenneth Pakenham, PhD, emeritus professor of clinical and health psychology at the University of Queensland in Brisbane, Australia. For more than 4 decades, he has investigated the psychological well-being welle-eing of caregivers, including coping mechanisms and innovative interventions to improve their quality of life. His work is dedicated to applying positive health frameworks to chronic illnesses and to empowering caregivers and individuals with MS. Together, their expertise illuminates the multifaceted challenges and opportunities in MS caregiving research and understanding.
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PURPOSE: Pediatric-onset multiple sclerosis (MS) is associated with risk for functional limitations defined as the perceived reduction in capacity for undertaking activities of daily living. Moderate-to-vigorous physical activity (MVPA) has been associated with less frequent and less impactful functional limitations, but the symptoms of fatigue and depression have not been considered as potential confounding variables. This study examined whether fatigue and depression confound the association between MVPA and functional limitations among youth with pediatric MS. METHODS: Participant data were accumulated from three ongoing observational studies. The combined sample included 65 cases of pediatric-onset MS (24 male/41 female, 16±1.7 years of age). Data on self-report MVPA, functional limitations, depression, and fatigue were analyzed. RESULTS: MVPA was significantly associated with functional limitations (râ=â0.45), fatigue (râ=â-0.28), and depression (râ=â-0.32). Functional limitations were associated with fatigue (râ=â-0.45) and depressive symptoms (râ=â-0.53). MVPA was significantly correlated with functional limitations (ß=â0.27, pâ=â0.04) even after accounting for general fatigue (ß=â0.08, pâ=â0.64) and depressive symptoms (ß=â-0.40, pâ=â0.03) among those with pediatric MS. CONCLUSION: Self-reported MVPA was associated with perceived functional limitations among youth with pediatric MS independent of perceived fatigue and depressive symptoms.
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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.
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Multiple Sclerosis, Relapsing-Remitting , Multiple Sclerosis , Humans , Multiple Sclerosis/therapy , Multiple Sclerosis/drug therapy , Magnetic Resonance Imaging , Surveys and Questionnaires , Disease Progression , Multiple Sclerosis, Relapsing-Remitting/drug therapyABSTRACT
Background: Community-dwelling older adults with early cognitive deficits experience less efficiency in performing everyday life tasks, resulting in decreased satisfaction and other adverse psychological outcomes. Mindfulness training has been linked to cognitive and psychological improvements and, most recently, has been identified as a potential intervention supporting performance of everyday life activities. Objective: This study aimed to evaluate whether mindfulness practice can improve perceived performance and satisfaction with everyday life activity and secondary psychological outcomes. Methods: This study is a pilot randomized controlled trial (RCT) in an interprofessional primary care team practice in Toronto, Ontario, Canada. The participants were 27 older adults aged 60 years of age or older living with early cognitive deficits. Participants were randomized into an 8-Week mindfulness training program (nâ=â14) group or a Wait-List Control (WLC; nâ=â13) group compared at baseline, post-intervention and 4-weeks follow-up. MANOVAs with post-hoc independent t-tests were used to compare between groups at different time points. Results: There was a significant improvement in anxiety for the intervention group compared to the WLC group at post-intervention; Time-2 (mean differenceâ=â3.90; CIâ=â0.04-7.75; pâ=â0.04) with large effect size (dâ=â0.80). Conclusion: Mindfulness training significantly improved anxiety scores for patients with early cognitive deficits post-intervention. Further work is required to test the sustainability of reduced anxiety over time, but this study demonstrated that MBSR is a promising primary care intervention for those living with early cognitive deficits. This study warrants the pursuit of a future study in exploring how long the reduced anxiety effects would be sustained.
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BACKGROUND: Rehabilitation is an essential health care service and a critical component of comprehensive multiple sclerosis (MS) care. OBJECTIVE: As part of a 2-day meeting hosted by the International Advisory Committee on Clinical Trials in MS in December 2022, a panel initiated a discussion on the conceptual and practical issues related to selecting intermediate outcomes for clinical trials of MS rehabilitation interventions. RESULTS: The overarching goal of rehabilitation - optimal functioning - was acknowledged as a complex biopsychosocial phenomenon that varies with patient priorities and environmental context. This complexity means that multiple causal pathways and potential intermediate outcomes must be carefully considered during the design of clinical trials in MS rehabilitation that aim to improve functioning. In addition, practical issues must be considered such as psychometric properties of outcome measures, measure type, and characteristics of the target population, including severity of dysfunction. CONCLUSION: This article uses the International Classification of Functioning, Disability and Health as a foundation for determining relevant intermediate outcomes for clinical trials of MS rehabilitation interventions.
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Disabled Persons , Multiple Sclerosis , Humans , Disability Evaluation , Disabled Persons/rehabilitation , Multiple Sclerosis/rehabilitation , Clinical Trials as TopicABSTRACT
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.
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Multiple Sclerosis , Humans , Ethnicity , Multiple Sclerosis/therapy , Research Design , Surveys and Questionnaires , Clinical Trials as TopicABSTRACT
BACKGROUND: The selection and description of participants in clinical trials enables health care providers to determine generalizability of findings to the populations they serve. Limited diversity of participants in trials restricts evidence-based decision-making. OBJECTIVES: To determine the extent to which diverse participants are being included in clinical trials of rehabilitation interventions for people with multiple sclerosis (MS). METHODS: We conducted a scoping review of MS rehabilitation trials published since January 2002 using MEDLINE, CINAHL, and Web of Science. Covidence was used to facilitate the review. Article selection required randomized control design, a rehabilitation intervention, and a functional status outcome. Data extracted included details of intervention(s), outcomes, and participant selection and description using a social determinants of health framework. RESULT: A total of 243 studies were included. Exercise interventions and impairment-focused outcomes were most common. Most studies used only a MS Clinic for recruitment. Common exclusion criteria were physical or mental comorbidities, disability, age, and cognitive impairment. Participant age and sex were reported for almost all trials; reporting of other social determinants of health was atypical. CONCLUSION: MS rehabilitation trials have used limited recruitment methods, restricted samples, and reported few participant descriptors. Changes are required to enhance participant diversity and the descriptions of participant characteristics.
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Multiple Sclerosis , Patient Selection , Humans , Multiple Sclerosis/rehabilitation , Randomized Controlled Trials as TopicABSTRACT
Fatigue is one of the most burdensome and disabling symptoms in numerous acute and chronic conditions and is associated with reduced participation in all aspects of daily life, for example, parenting, employment, and socialization. Historically, occupational practitioners played key roles in fatigue management by creating and implementing interventions. The American Occupational Therapy Foundation convened a Planning Grant Collective workshop with the goal to develop collaborative research ideas and proposals to advance the understanding and management of fatigue. Participants from occupational therapy and other disciplines, with expertise with fatigue or who were conducting research on fatigue, participated in a 3-day virtual workshop. Four main topics emerged: implementation science, treatment taxonomy, trial design and comparative effectiveness, and phenotyping. This white paper describes the proceedings, summarizes the discussions, and outlines recommendations from the PGC workshop on fatigue.