Research ObjectivesAlthough Black Americans may have the same multiple sclerosis (MS) prevalence rates as White Americans, they experience greater disability burden. Funded by the Consortium of MS Centers, this study asks: what, if any, barriers do Black Americans with MS experience when seeking diagnosis and treatment compared to White Americans with MS? This presentation describes the intersectional research design used to answer this question.DesignMixed methods study consisting of 1) a cross-sectional online survey of White and Black Americans with MS to identify differences and similarities in diagnosis and treatment experiences; 2) eight virtual focus groups with a random sample of survey participants from each racial group to explore key survey findings. Intersectional characteristics include: a racially diverse research team, collaboration with an independent sub-council of Black Americans with MS for input on study materials, partnership with iConquerMS, a patient-powered research network, for recruitment and input on instruments, collection of social determinants of health (SDOHs) data, community member checking of findings.SettingNational online study in the United States (US).ParticipantsSurvey: a convenience sample of approximately 100 White and 100 Black Americans with MS. Focus groups: a random sample of survey participants of up to 40 Black and 40 White people with MS. Inclusion criteria: 18 years or older, physician-diagnosed MS, US resident, access to the internet.InterventionsNot applicable.Main Outcome MeasuresDiagnosis delay, treatment delay, treatment adherence, medical mistrust, medical racism and discrimination, SDOHs.ResultsThis study uses an intersectional approach in two ways. First, the design enhances scientific and ethical rigor with a racially diverse research team, collaboration with people with MS, mixed methods, and member checking of findings. Second, collecting SDOH data enables analysis of how race, sociodemographics, and community factors interact to produce disparate MS outcomes.ConclusionsResearch investigating reasons for MS health disparities is nascent. An intersectional approach can further the field by increasing the validity of research findings in an ethical manner while simultaneously representing the complicated reality of how race intersects with other factors.Author(s) DisclosuresNone.

Multiple sclerosis (MS) is a chronic condition with variable physical, cognitive, and quality of life impacts. Little research has investigated how MS outcomes vary by social identity (race, gender, disability, age, sexual orientation, and nationality) and social location (place within systems of power and privilege). However, emerging evidence points to racial and ethnic group disparities in MS outcomes. This chapter integrates core concepts from the life course perspective and an intersectional feminist disability framework to interrogate the role of diagnosis pathways in determining differential MS outcomes. MS diagnosis pathways (the time from symptom onset to the point of diagnosis) are a logical place to begin this work given the varying nature of symptom onset and the importance of a quick diagnosis for optimal MS outcomes. Whereas the life course perspective provides a framework for understanding disability transitions and pathways across the life span, an intersectional feminist disability framework centers disability within an axis of overlapping social identities and locations. The combination of both frameworks provides an approach capable of examining how MS disparities and inequities emerge in different contexts over time. The chapter begins with an overview of MS and current knowledge on disparities (mainly racial) in MS prevalence, diagnosis, and outcomes. The chapter proceeds to describe the utility of key concepts of both the life course perspective and intersectional frameworks when researching health disparities. Finally, the chapter ends with a theoretical application of an intersectional feminist disability life course perspective to investigate disparities in MS diagnosis pathways.

Background: Successful translation of evidence-based exercise training interventions from research to clinical practice depends on the balance of treatment fidelity and adaptability when delivering the exercise program across settings. The current paper summarizes fidelity of study design, provider training, and intervention delivery strategies from best practice recommendations, and reports challenges experienced and adaptations instrumented by behavioral coaches delivering the multi-site Supervised versus Telerehabilitation Exercise Programs for Multiple Sclerosis (STEP for MS) Trial. Methods: Using a reflexive thematic analysis approach, open-ended survey questions were analyzed to explore experiences of behavioral coaches, transcripts from team meetings among behavioral coaches, and notes from audits of one-on-one sessions between behavioral coaches and participants. Results: Themes related to the fidelity of study design and delivery of the STEP for MS Trial included adaptations to the intervention itself (e.g., completion of virtual supervised exercise sessions with behavioral coaches in place of face-to-face sessions during COVID-19 pandemic restrictions), modification of exercise equipment, and adjustments of program delivery. The adjustments of program delivery reported by behavioral coaches included increasing program fit, maintaining engagement, and addressing participant safety concerns; however, these adaptations did not jeopardize the content of the essential elements of the program model. Conclusions: The current paper demonstrates that when best practice recommendations are implemented, it is possible to address challenges to study design and evidence-based intervention delivery in ways that adaptations to overcome real-world obstacles can be accomplished without compromising fidelity.

BACKGROUND:During spring and summer 2020, US states implemented COVID-19 pandemic restrictions, resulting in the closure of rehabilitation facilities and, with them, some of the clinical trials that were taking place. One such trial was the Supervised Versus Telerehabilitation Exercise Program for Multiple Sclerosis ("STEP for MS") comparative effectiveness multiple sclerosis (MS) exercise trial. Although 1 study arm was implemented via telerehabilitation, the comparative arm took place in rehabilitation facilities nationwide and was subsequently closed during this time frame. The experience of the STEP for MS participants provides insights into the impact of lockdown restrictions on exercise behavior by mode of exercise delivery (telerehabilitation vs conventional facility based).OBJECTIVE:This study sought to understand the impact of COVID-19 lockdown restrictions on exercise behavior among people with MS enrolled in an exercise trial at the time of the restrictions.METHODS:Semistructured phone and video interviews were conducted with a convenience sample of 8 participants representing both arms of the exercise trial. We applied reflexive thematic analysis to identify, analyze, and interpret common themes in the data.RESULTS:We identified 7 main themes and 2 different narratives describing the exercise experiences during lockdown restrictions. Although the telerehabilitation participants continued exercising without interruption, facility-based participants experienced a range of barriers that impeded their ability to exercise. In particular, the loss of perceived social support gained from exercising in a facility with exercise coaches and other people with MS eroded both the accountability and motivation to exercise. Aerobic exercises via walking were the most impacted, with participants pointing to the need for at-home treadmills.CONCLUSIONS:The unprecedented disruption of COVID-19 lockdown restrictions in spring and summer 2020 impacted the ability of facility-based STEP for MS exercise trial participants to exercise in adherence to the intervention protocol. By contrast, the participants in the telerehabilitation-delivered exercise arm continued exercising without interruption and reported positive impacts of the intervention during this time. Telerehabilitation exercise programs may hold promise for overcoming barriers to exercise for people with MS during COVID-19 lockdown restrictions, and potentially other lockdown scenarios, if the participation in telerehabilitation has already been established.

Research Objectives People with Multiple Sclerosis (MS) face challenges managing complex symptoms and navigating daily life. Self-management interventions may help overcome these challenges, but research is lacking on how to tailor self-management interventions for people with MS. This study describes a clinician-researcher-stakeholder partnership to design, pilot, and evaluate the feasibility of a new self-management intervention "Self-management Education and Learning Forum for People with MS (SELF for MS)." Design SELF for MS reflects an integrated, iterative clinician-stakeholder-researcher development process involving several key steps: 1) review of the clinical and self-management evidence base, 2) stakeholder needs assessment, 3) development of an Advisory Committee, and 4) iterative program development. Setting A comprehensive MS care center in urban, Southeastern USA. Participants Clinicians (speech language pathologists, neurologists, physical therapists, exercise specialists, psychologists), MS stakeholders (people with MS and care partners), and MS researchers collaborated to develop SELF for MS through an iterative research and design process. Interventions Not applicable. Main Outcome Measures The outcome of the described clinician-researcher-stakeholder partnership is the development and pilot testing of the SELF for MS program. Results SELF for MS was successfully developed over a two and a half-year period. The engagement of clinicians and MS stakeholders in partnership with MS researchers was instrumental to creating an intervention that meets patient needs in a clinical setting. Conclusions An iterative approach involving clinicians, MS stakeholders, and MS researchers resulted in a comprehensive self-management intervention centered on the needs of people with MS while reflecting best clinical practice. Author(s) Disclosures No disclosures.

Research Objectives People with Multiple Sclerosis (MS) face challenges managing complex symptoms and navigating daily life. Self-management interventions (SMIs) may help, but research is lacking on the perceived need for SMIs and how perceptions may differ between people with MS (PwMS), carepartners, and MS providers. This exploratory study: 1) determines the need for an MS SMI; 2) identifies similarities and differences in perceived need between PwMS, carepartners, and providers; and 3) generates ideas to inform future self-management research. Design A qualitative, exploratory study using focus group (FG) methodology with PwMS (3 FGs), carepartners (1 FG), and medical and rehabilitation MS providers (2 FGs). FGs were audio-recorded, transcribed, then analyzed using the Collaborative Qualitative Analysis approach. Setting: A comprehensive MS care center in urban, southern USA. Participants Participants represent a convenience sample of 16 PwMS, 4 carepartners, 6 medical providers, 10 rehabilitation providers. Interventions Not applicable. Main Outcome Measures The FG moderator's guide included questions about: 1) priority MS symptoms; 2) barriers and facilitators to self-managing MS; 3) MS self-management strategies; 4) program and resource gaps. Results Results confirm that PwMS experience self-management challenges. PwMS and carepartner FGs revealed similar findings related to barriers and facilitators to self-managing MS and agreed that an SMI would be beneficial. While providers also agreed an MS SMI is needed, there were differences between groups in relation to barriers to self-management. Specifically, societal perceptions/stigma and the built environment were identified by PwMS as barriers, but not providers. PwMS also discussed the importance of alternative therapies and wellness activities, not discussed similarly by all provider types. Conclusions PwMS may benefit from SMIs. Obtaining input from PwMS, their carepartners and providers provides a holistic picture of the barriers to self-management that can inform content development. Author(s) Disclosures None. People with Multiple Sclerosis (MS) face challenges managing complex symptoms and navigating daily life. Self-management interventions (SMIs) may help, but research is lacking on the perceived need for SMIs and how perceptions may differ between people with MS (PwMS), carepartners, and MS providers. This exploratory study: 1) determines the need for an MS SMI; 2) identifies similarities and differences in perceived need between PwMS, carepartners, and providers; and 3) generates ideas to inform future self-management research. A qualitative, exploratory study using focus group (FG) methodology with PwMS (3 FGs), carepartners (1 FG), and medical and rehabilitation MS providers (2 FGs). FGs were audio-recorded, transcribed, then analyzed using the Collaborative Qualitative Analysis approach. Setting: A comprehensive MS care center in urban, southern USA. Participants represent a convenience sample of 16 PwMS, 4 carepartners, 6 medical providers, 10 rehabilitation providers. Not applicable. The FG moderator's guide included questions about: 1) priority MS symptoms; 2) barriers and facilitators to self-managing MS; 3) MS self-management strategies; 4) program and resource gaps. Results confirm that PwMS experience self-management challenges. PwMS and carepartner FGs revealed similar findings related to barriers and facilitators to self-managing MS and agreed that an SMI would be beneficial. While providers also agreed an MS SMI is needed, there were differences between groups in relation to barriers to self-management. Specifically, societal perceptions/stigma and the built environment were identified by PwMS as barriers, but not providers. PwMS also discussed the importance of alternative therapies and wellness activities, not discussed similarly by all provider types. PwMS may benefit from SMIs. Obtaining input from PwMS, their carepartners and providers provides a holistic picture of the barriers to self-management that can inform content development.

People with MS (PwMS) face challenges managing complex symptoms and navigating daily life. Self-management interventions (SMIs) may help overcome these challenges but research is lacking on how to tailor SMIs for PwMS. This study aimed to: 1) determine the need for a multiple sclerosis (MS) SMI; 2) describe how PwMS manage MS; and 3) generate ideas to inform future self-management programs.