Fatigue is a common symptom of multiple sclerosis (MS) with negative impacts extending from general functioning to quality of life. Both the cause and consequences of MS fatigue are considered multidimensional and necessitate multidisciplinary treatment for successful symptom management. Clinical practice guidelines suggest medication and rehabilitation for managing fatigue. This review summarized available research literature about three types of fatigue management interventions (exercise, education, and medication) to provide comprehensive perspective on treatment options and facilitate a comparison of their effectiveness. We researched PubMed, Embase, and CINAHL (August 2013). Search terms included multiple sclerosis, fatigue, energy conservation, Amantadine, Modafinil, and randomized controlled trial. The search identified 230 citations. After the full-text review, 18 rehabilitation and 7 pharmacological trials targeting fatigue were selected. Rehabilitation interventions appeared to have stronger and more significant effects on reducing the impact or severity of patient-reported fatigue compared to medication. Pharmacological agents, including fatigue medication, are important but often do not enable people with MS to cope with their existing disabilities. MS fatigue affects various components of one’s health and wellbeing. People with MS experiencing fatigue and their healthcare providers should consider a full spectrum of effective fatigue management interventions, from exercise to educational strategies in conjunction with medication.
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.
Purpose: We undertook a qualitative study that explored the needs of healthcare providers for promoting exercise behaviour among persons with mild or moderate multiple sclerosis (MS). Methods: We used interpretive description methodology, and conducted semi-structured interviews with Neurologists (n = 13), occupational therapists (n = 10), physical therapists (n = 11), and nurses (n = 10). The interviews were analysed using thematic analysis. Results: We identified three themes with multiple subthemes regarding exercise promotion by healthcare providers. The first theme was “opportunities for exercise promotion” through the healthcare system, healthcare team, and clinical appointment. The second theme was “healthcare provider education” that included professional training, training among healthcare providers, and clear and defined exercise promotion protocols. The third theme was “patient tools/strategies” that should be delivered among persons with MS as part of the exercise prescription. Conclusions: Providers in MS healthcare consider the patient-provider interaction within the healthcare system, healthcare team, and clinical appointment as a novel opportunity for exercise promotion. Such an opportunity requires education of healthcare providers and provision of tools and strategies for exercise promotion among persons with MS.
22 December 2021 in Health & Social Care in the Community
Unpaid caregivers, typically family and friends, provide significant amounts of support to people with multiple sclerosis (MS). Understanding their experiences, needs and challenges is necessary to ensure that caregivers receive the support that they require to continue in their role. Our aim was to map the current state of knowledge about unpaid caregivers of people with MS and identify gaps in knowledge to guide future research and practice. We used scoping review methodology with three major health-related databases (MEDLINE, CINAHL, APA Psychinfo), searching in September 2019, April and October 2020 and October 2021. We selected peer-reviewed scientific articles reporting on primary studies of unpaid caregivers of people with MS, regardless of topic or research design. We extracted information on study aim, participant characteristics, measures used and key findings to generate major themes and identify knowledge gaps. We identified 108 published studies between 1992 and 2021 that met our criteria. Studies of spousal caregivers were most common. Studies focused primarily on measurement of caregiver burden or other negative consequences of caregiving. Thirteen studies addressed positive consequences of caregiving. Sixteen studies reported actual tasks performed by caregivers and seven reported outcomes of caregiver support interventions. Attention to diversity issues that may influence caregiving experiences and outcomes was rare. Overall, knowledge of MS caregiving is limited, particularly with respect to tasks performed by caregivers that may contribute to negative outcomes, diversity issues and effective approaches to remediate caregiver burden. Without this knowledge, finding ways to better support MS caregivers will be difficult.
Chronic fatigue and inactivity are prevalent problems among individuals with multiple sclerosis (MS) and may independently or interactively have detrimental effects on quality of life and ability to participate in life roles. However, no studies to date have systematically evaluated the benefits of an intervention for both managing fatigue and promoting physical activity in individuals with MS. This study involves a randomized controlled trial to examine the effectiveness of a telehealth intervention that supports individuals with MS in managing fatigue and increasing physical activity levels.
Background: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. Objective: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. Methods: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. Results: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. Conclusions: This coordinated call to action—to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them—is an important step in addressing gaps in rehabilitation research for people affected by progressive MS.