The MoXFo initiative - adherence: Exercise adherence, compliance and sustainability among people with multiple sclerosis: An overview and roadmap for research.

We know very little about exercise adherence, compliance and sustainability in multiple sclerosis (MS), yet adherence is seemingly important for yielding immediate and sustained health benefits. This paper is focused on exercise adherence, compliance and sustainability in the context of informing research and practice involving MS. This focus is critical for clarifying terminology for future research and providing a roadmap guiding clinical research and practice. Our objective was accomplished through a narrative summary of the literature by a panel of experts on exercise adherence from the Moving Exercise Research in Multiple Sclerosis Forward (MoXFo) initiative and a concluding summary of the state of the literature and future research directions. The panel of experts identified three overall themes (Background and Importance; Understanding and Promoting Exercise Adherence, Compliance and Sustainability and Challenges to Exercise Adherence, Compliance and Sustainability) that represented a categorization of nine subthemes. These overall themes and subthemes formed the basis of our recommendations regarding future research broadly involving exercise adherence in MS. Overall, there is limited evidence on rates and determinants of exercise adherence and compliance in MS, and little is known about techniques and interventions for immediate and long-term exercise behaviour change.

Considerations for Implementing the Post-Concussion Collegiate Return-to-Learn Protocol in the National Collegiate Athletic Association Power 5 Conferences.

OBJECTIVE: Although concussions affect millions of young adults annually, researchers have yet to assess factors that may affect future implementation of post-concussion academic supports within higher education. Therefore, we sought to evaluate preimplementation outcomes of the acceptability, feasibility, appropriateness, and readiness for change of the Post-Concussion Collegiate Return-to-Learn (RTL) Protocol among university stakeholders. SETTING: An online survey. PARTICIPANTS: A convenience sample ( N = 49; 63.3% female) of athletic trainers (ATs; n = 25, age = 30.1 ± 7.6 years) and university faculty/staff ( n = 24, age = 38.3 ± 9.9 years) across the National Collegiate Athletic Association (NCAA) Power 5 Conferences from January to February 2022. DESIGN: A cross-sectional study. MAIN MEASURES: To compare preimplementation outcome measures using the Acceptability of Intervention Measure (AIM), Feasibility of Intervention Measure (FIM), Intervention Appropriateness Measure (IAM), and Organizational Readiness for Implementing Change (ORIC) regarding the RTL protocol between ATs and university faculty/staff. Additional outcomes included internal and external barriers to implementing at their respective institutions. Statistical analyses were conducted using Mann-Whitney U tests, with effect sizes estimated using eta-squared coefficient (η 2 ). RESULTS: Quantitative analyses yielded no statistically significant group differences ( P s > .05) across the AIM, FIM, and IAM outcomes, indicating both groups perceived the protocol to be acceptable, feasible, and appropriate. Moreover, ATs reported higher agreement regarding motivation, desire, willingness to do "whatever it takes," commitment, and determination to implement the novel protocol than faculty/staff. Further, ATs reported higher agreement regarding their institution's confidence to keep track of its progress, support adjustment, maintain momentum, manage institutional politics, coordinate tasks, encourage investment, and handle the challenges of future implementation of the RTL protocol. CONCLUSIONS: Preliminary findings suggest ATs and university faculty/staff across the NCAA Power 5 Conferences may perceive the RTL protocol to be acceptable, feasible, and appropriate for future use; however, noteworthy internal and external barriers may influence its uptake. Future research should utilize implementation frameworks to support the protocol's adoption and reach.

Is maximum grip strength a reliable predictor of hand limitations among older adults?

BACKGROUND: Grip strength is commonly used to assess hand function among older adults. While shown to be associated with disability, the degree to which grip strength specifically predicts hand limitations is unknown. AIMS: The primary aim of this study was to evaluate grip strength as a predictor of hand limitations. METHODS: Using the 2011-14 National Health and Nutrition Examination Survey (NHANES), we classified older adults reporting one or more hand limitations versus those with no limitations. Odds ratios were used to assess the association between grip strength (separated into quartiles) and the likelihood of a hand limitation while controlling for sex, race/ethnicity, education level, income, and pain. Receiver operator characteristic (ROC) curves were used to evaluate the degree to which grip strength discriminates between older adults with and without a hand limitation. RESULTS: We identified 2064 older adults (age ≥ 65), 31% of whom reported a hand-related limitation. Older adults with very low grip strength (weakest quartile) were more likely to report at least one limitation (OR: 6.1, 95% CI: 3.2, 11.8) than those with high grip strength (strongest quartile). However, grip strength had poor to moderate discrimination of hand limitations (ROC area under curves: 0.65-0.81). DISCUSSION: While self-reported hand limitations were associated with lower grip strength; overall, it is a relatively poor predictor of hand impairments among older adults. CONCLUSION: Better assessments are needed to adequately evaluate upper extremity impairments to help older adults maintain functional independence.

Medicalization of Exercise Through Vigilance, Productivity, and Self-Care: A Secondary Data Analysis of Qualitative Interviews Among Those With Multiple Sclerosis.

Exercise is becoming more integrated into the management of multiple sclerosis (MS) and is promoted to manage impairments and symptoms. Whereas extensive research outlines factors impacting participation, less is known regarding how medicalized exercise promotion might impact views of exercise and self. We conducted a secondary data analysis to understand how medicalized exercise-promotion paradigms impact the meaning and roles of exercise among those with MS. Twenty-two interviews were selected for reanalysis with an interpretative phenomenological analysis methodology and a critical disability studies lens. Three themes were identified: Constant Vigilance (worry about exercise), Productivity and Social Engagement (exercise to feel productive, engage socially, and enhance self-worth), and Exercise as Medicine/Self-Care (exercise to manage MS, relax, improve mental well-being, prevent/reverse disability, and stay healthy). This research underscores that exercise occupies many contradictory roles reflecting a medicalized exercise-promotion paradigm for those with MS, and this should inform exercise promotion practices.

Clinician Perceptions of Robotic Exoskeletons for Locomotor Training After Spinal Cord Injury: A Qualitative Approach.

OBJECTIVE: To describe the experiences of clinicians who have used robotic exoskeletons in their practice and acquire information that can guide clinical decisions and training strategies related to robotic exoskeletons. DESIGN: Qualitative, online survey study, and 4 single-session focus groups followed by thematic analysis to define themes. SETTING: Focus groups were conducted at 3 regional rehabilitation hospitals and 1 Veteran's Administration (VA) Medical Center. PARTICIPANTS: Clinicians (N=40) reported their demographic characteristics and clinical experience using robotic exoskeletons. Twenty-nine clinicians participated in focus groups at regional hospitals that use robotic exoskeletons, as well as 1 VA Medical Center. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Clinicians' preferences, experiences, training strategies, and clinical decisions on how robotic exoskeleton devices are used with Veterans and civilians with spinal cord injury. RESULTS: Clinicians had an average of 3 years of experience using exoskeletons in clinical and research settings. Major themes emerging from focus group discussions included appropriateness of patient goals, patient selection criteria, realistic patient expectations, patient and caregiver training for use of exoskeletons, perceived benefits, preferences regarding specific exoskeletons, and device limitations and therapy recommendations. CONCLUSIONS: Clinicians identified benefits of exoskeleton use including decreased physical burden and fatigue while maximizing patient mobility, increased safety of clinicians and patients, and expanded device awareness and preferences. Suitability of exoskeletons for patients with various characteristics and managing expectations were concerns. Clinicians identified research opportunities as technology continues to advance toward safer, lighter, and hands-free devices.

Users with spinal cord injury experience of robotic Locomotor exoskeletons: a qualitative study of the benefits, limitations, and recommendations.

BACKGROUND: Persons with spinal cord injury (SCI) may experience both psychological and physiological benefits from robotic locomotor exoskeleton use, and knowledgeable users may have valuable perspectives to inform future development. The objective of this study is to gain insight into the experiences, perspectives, concerns, and suggestions on the use of robotic locomotor exoskeletons by civilians and veterans living with SCI. METHODS: Participants reported their demographic characteristics and the extent of robotic exoskeleton use in an online survey. Then, 28 experienced robotic locomotor exoskeleton users participated in focus groups held at three regional hospitals that specialize in rehabilitation for persons with SCI. We used a qualitative description approach analysis to analyze the data, and included thematic analysis. RESULTS: Participants expressed that robotic exoskeletons were useful in therapy settings but, in their current form, were not practical for activities of daily living due to device limitations. Participants detailed the psychological benefits of being eye-level with their non-disabled peers and family members, and some reported physiologic improvements in areas such as bowel and bladder function. Participants detailed barriers of increased fatigue, spasticity, and spasms and expressed dissatisfaction with the devices due to an inability to use them independently and safely. Participants provided suggestions to manufacturers for technology improvements. CONCLUSIONS: The varied opinions and insights of robotic locomotor exoskeletons users with SCI add to our knowledge of device benefits and limitations.

Physical Activity and Its Correlates in Youth with Multiple Sclerosis.

OBJECTIVES: To investigate physical activity levels in youth with multiple sclerosis and monophasic acquired demyelinating syndromes ([mono-ADS], ie, children without relapsing disease) compared with healthy controls and to determine factors that contribute to engagement in physical activity. We hypothesized that greater physical activity goal setting and physical activity self-efficacy would be associated with greater levels of vigorous physical activity in youth with multiple sclerosis. STUDY DESIGN: A total of 68 consecutive patients (27 multiple sclerosis, 41 mono-ADS) and 37 healthy controls completed fatigue, depression, Physical Activity Self-Efficacy Scale, perceived disability, Exercise Goal-Setting scale, and physical activity questionnaires, and wore an accelerometer for 7 days. All patients had no ambulatory limitations (Expanded Disability Status Scale, scores all <4). RESULTS: Youth with multiple sclerosis engaged in fewer minutes per day of vigorous (P = .009) and moderate and vigorous physical activity (P = .048) than did patients with mono-ADS and healthy controls. A lower proportion of the group with multiple sclerosis (63%) reported participating in any strenuous physical activity than the mono-ADS (85%) and healthy control (89%) groups (P = .020). When we adjusted for age and sex, the Physical Activity Self-Efficacy Scale and Exercise Goal-Setting scale were associated positively with vigorous physical activity in the group with multiple sclerosis. Fatigue and depression did not predict physical activity or accelerometry metrics. CONCLUSIONS: Youth with multiple sclerosis participate in less physical activity than their counterparts with mono-ADS and healthy controls. Physical activity self-efficacy and exercise goal setting serve as potentially modifiable correlates of physical activity, and are measures suited to future interventions aimed to increase physical activity in youth with multiple sclerosis.

Social Cognitive Correlates of Physical Activity in Black Individuals With Multiple Sclerosis.

OBJECTIVE: To examine variables from social cognitive theory as correlates of physical activity in black and white individuals with multiple sclerosis (MS). DESIGN: Cross-sectional. SETTING: National survey. PARTICIPANTS: Black (n=151) and white (n=185) individuals with MS were recruited through the North American Research Committee on Multiple Sclerosis Registry. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: The battery of questionnaires included information on demographic and clinical characteristics, physical activity, exercise self-efficacy, function, social support, exercise outcome expectations, and exercise goal setting and planning. RESULTS: Black individuals with MS reported significantly lower levels of physical activity compared with white individuals with MS. Physical activity levels were significantly correlated with self-efficacy, outcome expectations, functional limitations as impediments, and goal setting in black participants with MS. The pattern and magnitude of correlations were comparable with those observed in white participants based on Fisher z tests. CONCLUSIONS: Researchers should consider applying behavioral interventions that target social cognitive theory variables for increasing physical activity levels among black individuals with MS.

Physical activity and pediatric multiple sclerosis: Developing a research agenda.

Three-quarters of children with multiple sclerosis (MS) experience fatigue or depression, and progressive neurocognitive decline may be seen as early as two years after MS diagnosis. Furthermore, a higher magnetic resonance imaging disease burden is seen in pediatric-onset MS compared with adult-onset MS. To date, limited knowledge exists regarding behavioral methods for managing symptoms and disease progression in pediatric MS. To that end, this paper builds an evidence-based argument for the possible symptomatic and disease-modifying effects of exercise and physical activity in pediatric MS. This will be accomplished through: (a) a review of pediatric MS and its consequences; (b) a brief overview of physical activity and its consequences in children and adults with MS; and (c) a selective review of research on the neurological benefits of physical activity in pediatric populations. This topical review concludes with a list of 10 questions to guide future research on physical activity and pediatric MS. The objective of this paper is the provision of a research interest, focus and agenda involving pediatric MS and its lifelong management though exercise and physical activity behavior. Such an agenda is critical as the effects and maintenance of physical activity and exercise track across the lifespan, particularly when developed in the early stages of life.

Preliminary validation of the short physical performance battery in older adults with multiple sclerosis: secondary data analysis.

BACKGROUND: There are relatively few standard, objective measures for studying physical function among older adults with multiple sclerosis (MS), yet such measures are necessary considering the shift in prevalence and associated consequences of both MS and older age on physical function. We undertook a preliminary examination of the construct validity of Short Physical Performance Battery (SPPB) scores in older adults with MS based on an expected differential pattern of associations with measures of lower and upper extremity function. METHODS: The sample included 48 persons with MS aged 50 years and older who were enrolled in a pilot, randomized controlled trial of exercise training. Participants completed the SPPB and other objective and self-report measures of lower and upper extremity function as part of baseline testing. RESULTS: SPPB scores demonstrated strong associations with measures of lower extremity function (|r s| = .66-.79), and weak associations with measures of upper extremity function (|r s| = .03-.33). CONCLUSIONS: We provide preliminary evidence that supports the validity of scores from the SPPB as a measure of lower extremity function for inclusion in clinical research and practice involving older adults with MS.

Racial/Ethnic Differences in Self-Reported Upper Limb Limitations Among U.S. Older Adults.

BACKGROUND: The development of disability related to activities of daily living (ADL) is of great concern in the aging population, particularly for Hispanic and Non-Hispanic (NH) Black older adults, where disability prevalence is greater compared to NH Whites. ADL-disability is typically measured across many functional tasks without differentiating upper- versus lower-limb limitations, hindering our understanding of disability burden. Despite the importance of the upper limbs for completing ADL and known age-related declines in function, racial/ethnic differences in upper limb function remain largely unknown. METHODS: We identified 4 292 NH White, NH Black, and Mexican American older adults (≥65) from the 2011-2018 waves of the National Health and Nutrition Examination Survey (NHANES). We classified participants as having a limitation based on their ability to complete 5 upper-limb tasks (preparing meals, eating, dressing, reaching overhead, and grasping small objects) and compared limitation rates across racial/ethnic groups. RESULTS: Compared to NH Whites, NH Black older adults had significantly greater odds of reporting difficulties preparing meals (odds ratio [OR]: 1.36, 95% confidence interval [95% CI]: 1.01, 1.86) and dressing (OR: 1.55, 95% CI: 1.19, 2.02), while Mexican Americans had greater difficulty preparing meals (OR: 1.70, 95% CI: 1.12, 2.58), dressing (OR: 1.63, 95% CI: 1.12, 2.36), and grasping small objects (OR: 1.48, 95% CI: 1.06, 2.07). CONCLUSIONS: Our results demonstrate differences in self-reported upper limb ADL-disability across racial/ethnic groups, particularly for Mexican American older adults. Such findings underscore the need for routine monitoring of upper limb function throughout adulthood to identify limitations and target therapeutic interventions before independence is compromised.

Recommendations for physical activity and exercise in persons living with Systemic Lupus Erythematosus (SLE): consensus by an international task force.

OBJECTIVE: This international task force aimed to provide healthcare professionals and persons living with systemic lupus erythematosus (SLE) with consensus-based recommendations for physical activity and exercise in SLE. METHODS: Based on evidence from a systematic literature review and expert opinion, 3 overarching principles and 15 recommendations were agreed on by Delphi consensus. RESULTS: The overarching principles highlight the importance of shared decision-making and the need to explain the benefits of physical activity to persons living with SLE and other healthcare providers. The 15 specific recommendations state that physical activity is generally recommended for all people with SLE, but in some instances, a medical evaluation may be needed to rule out contraindications. Pertaining to outdoor activity, photoprotection is necessary. Both aerobic and resistance training programmes are recommended, with a gradual increase in frequency and intensity, which should be adapted for each individual, and ideally supervised by qualified professionals. CONCLUSION: In summary, the consensus reached by the international task force provides a valuable framework for the integration of physical activity and exercise into the management of SLE, offering a tailored evidence-based and eminence-based approach to enhance the well-being of individuals living with this challenging autoimmune condition.

Targeted exercise for African-Americans with multiple sclerosis: Project TEAAMS.

BACKGROUND: We propose a randomized controlled trial (RCT) that examines the effects of a remotely-delivered, cultrally-tailored exercise training program for immediate and sustained improvements in patient-reported outcomes (PROs) of walking dysfunction, symptoms, and health-related quality of life (HRQOL) among African-Americans with multiple sclerosis (MS). METHODS/DESIGN: The study will be conducted using a parallel group RCT design. The RCT examines the effects of a remotely-delivered, culturally-tailored exercise training program compared with an active control condition among 100 African-Americans with MS. The primary PROs focus on walking dysfunction. The secondary PROs include symptoms of fatigue, depression, anxiety, and HRQOL. The tertiary PROs include exercise behavior and mediator variables based on social cognitive theory. Participants will be randomly assigned into one of two conditions, intervention (Aerobic and Resistance Exercise Training) or active control (Stretching and Flexibility), using a random numbers sequence with concealed allocation. The conditions will be administered over four months by a trained behavioral coach who will be uninvolved in recruitment, screening, random assignment, and outcome assessment. We will monitor the outcomes of interest before and after the 4-month intervention period, and then again 4 months after intervention cessation for capturing stability of intervention effects. The data analysis will follow intent-to-treat principles with a linear mixed model. DISCUSSION: If successful, this RCT will provide initial evidence for the uptake and implementation of the program in clinics/environments providing healthcare for African-Americans with MS.

Social cognitive correlates of device-measured and self-reported physical activity in Black and White individuals with multiple sclerosis.

BACKGROUND: There is increasing research interest regarding physical activity behavior among persons with multiple sclerosis (MS), yet there is little known about physical activity and its correlates in Black persons with MS. OBJECTIVE: This cross-sectional study assessed associations among social cognitive theory (SCT) variables and device-measured and self-reported physical activity in samples of Black and White persons with MS. METHODS: Participants included 67 Black and 141 White persons with MS who wore an ActiGraph accelerometer on a belt around the waist measuring moderate-to-vigorous physical activity (MVPA) for seven days and completed a battery of questionnaires. Questionnaires included demographic and clinical characteristics, leisure-time exercise, exercise self-efficacy, overcoming barriers self-efficacy, function, social support, exercise outcome expectations, and goal setting and planning. RESULTS: Black participants with MS engaged in significantly less MVPA, but not sedentary behavior or light physical activity, than the White participants with MS. Black participants further had significantly lower levels of exercise self-efficacy and outcome expectations than the White sample. All SCT correlates were significantly correlated with self-reported physical activity, but only exercise and barriers self-efficacy, perceived function, and exercise goal setting were associated with device-measured MVPA. The difference in physical activity between Black and White participants with MS was accounted for by differences in exercise self-efficacy and outcome expectations. CONCLUSIONS: Researchers should consider developing behavioral interventions that target exercise self-efficacy and outcome expectations as SCT variables for increasing physical activity in Black persons with MS.

The experiences of inaccessibility and ableism related to physical activity: a photo elicitation study among individuals with multiple sclerosis.

PURPOSE: Strong evidence supports the benefits of physical activity (PA) and exercise for adults with multiple sclerosis (MS) and multidisciplinary PA guidelines exist. Previous research indicates that healthcare professionals may not yet widely promote exercise to their patients with MS. Before active promotion of PA/exercise becomes widespread practice for healthcare professionals, it is essential to understand the disability and inaccessibility-related barriers to exercise for this population. We sought to understand the barriers to PA/exercise among individuals with MS across a spectrum of MS impairment. METHODS: Participants were instructed to take pictures of people, places and things that make PA/exercise easier or more difficult in preparation for a semi-structured interview. This photo elicitation approach allowed individuals to explain the barriers they faced even if they would not attribute those barriers to ableism or inaccessibility themselves. Interviews were analyzed using Interpretative Phenomenological Analysis. RESULTS: Twenty-three persons with MS participated. Three main themes were: inaccessibility limits PA/exercise participation, ableism happens in the PA space, and assistive devices both provide access to PA and are associated with disability stigma. CONCLUSION: This study adds nuance to current understandings of the barriers and facilitators of PA in this population by illustrating the disability-specific barriers and experiences with inaccessibility. With increasing efforts to promote PA, there must be an increased awareness of the structural inequalities and barriers that physically and psychologically affect decision-making around PA.IMPLICATIONS FOR REHABILITATIONThere are many barriers to exercise for individuals with multiple sclerosis which prevent this population from experiencing the benefits of exercise.Rehabilitation professionals may play a role in drawing attention to accessible resources when providing recommendations or discussing barriers with their patients/clients.Rehabilitation professionals should consider that people with MS make decisions about assistive technology based on their needs, the meanings they attribute to it, expectations and attitudes of people around them.People with MS experience disability stigma as they participate in exercise and physical activity and this may extend into the rehabilitation space in the form of perceived compulsory ablebodiedness.

Motivational interviewing intervention for increasing physical activity and improving dietary behaviors: The Lupus Intervention Fatigue Trial protocol.

The Lupus Intervention Fatigue Trial (LIFT) is a prospective, randomized controlled trial to assess the effectiveness of a six-month motivational interviewing intervention program versus an educational control to reduce fatigue in persons with systematic lupus erythematosus (SLE). Participants are randomized using a stratified, 1:1 allocation design to the LIFT intervention or control arm. We plan to enroll 236 participants to achieve the target of 200 persons with six-month follow-up for the primary endpoint. Specific aims of this study are to evaluate the impact of the LIFT intervention on 1) self-reported measures of fatigue and 2) impact on accelerometer-measured physical activity. The primary study outcome is six-month change in fatigue from baseline, assessed by the Fatigue Severity Score (FSS). Additional outcomes include objective measures of physical activity, including non-sedentary behavior and moderate-to-vigorous activity (secondary outcome), and adherence to the LIFT dietary intervention, as assessed by nutrient density (diet quality) and recommended food groups/eating patterns (exploratory outcome) in persons with SLE. Intervention effectiveness will be assessed using an intention-to-treat two-arm comparison of six-month change in FSS, with one interim monitoring analysis. A two-sample independent group t-test will compare the six-month changes in FSS between the study arms. Intervention effect durability will be assessed 12-months after baseline (6 months after completion of the intervention). Enrollment began in June 2019 and is expected to end in June 2023. This study will inform future intervention strategies that promote physical activity and improved diet quality to reduce fatigue in persons with SLE.

Appraisals of robotic locomotor exoskeletons for gait: focus group insights from potential users with spinal cord injuries.

Purpose: To describe appraisals of robotic exoskeletons for locomotion by potential users with spinal cord injuries, their perceptions of device benefits and limitations, and recommendations for manufacturers and therapists regarding device use.Materials and methods: We conducted focus groups at three regional rehabilitation hospitals and used thematic analysis to define themes.Results: Across four focus groups, 35 adults participated; they were predominantly middle-aged, male, and diverse in terms of race and ethnicity, well educated, and not working. Participants had been living with SCI an average of two decades. Most participants were aware of exoskeletons. Some were enthusiastic about the usability of the devices while others were more circumspect. They had many questions about device affordability and usability, and were discerning in their appraisal of benefits and suitability to their particular circumstances. They reflected on device cost, the need for caregiver assistance, use of hands, and environmental considerations. They weighed the functional benefits relative to the cost of preferred activities. Their recommendations focused on cost, battery life, and independent use.Conclusions: Potential users' appraisals of mobility technology reflect a nuanced appreciation of device costs; functional, social, and psychological benefits; and limitations. Results provide guidance to therapists and manufacturers regarding device use.Implications for RehabilitationPotential users of robotic locomotor exoskeletons with spinal cord injuries appreciate the functional, social, and psychological benefits that these devices may offer.Their appraisals reflect nuanced consideration of device cost and features, and the suitability of the assistive technology to their circumstances.They recommend that manufacturers focus on reducing cost, extending battery life, and features that allow independent use.

Preferences for exercise among black individuals with multiple sclerosis.

BACKGROUND: The promotion of exercise among black individuals with multiple sclerosis (MS) is important for managing the functional and symptomatic manifestations of MS. OBJECTIVE: The objective of this study was to elicit exercise program preferences among black individuals with MS. METHODS: Participants completed a survey delivered through Qualtrics. The survey measured exercise program component preferences, the importance of racial considerations, and barriers and facilitators to exercise participation. RESULTS: Forty black individuals with MS completed the survey and reported a preference for five days per week (range 0-7) of exercise at a moderate intensity (50% of the sample). Over 60% of participants desired an exercise program that was longer than six months, and over half wanted the aid of a behavioral coach. Participants preferred weight/resistance training exercises (52.5%) and easy walking (35%) modalities. The outcomes expected from exercise were increased muscle strength (65%) and improved overall body functioning (60%). The anticipated barriers for exercise were largely fatigue (40%) and time management (32.5%). The desired facilitators were a personal trainer (57.5%) and more exercise information (32.5%). Cultural and racial tailoring was very important or held some importance on the components of the program. CONCLUSION: The findings of this study should be considered when developing exercise interventions for black individuals with MS.

Capitalising on the opinions of persons with multiple sclerosis to inform the main trial - participant opinions from participation in a feasibility study, a qualitative extension study.

Background: Patient and public involvement and engagement and consumer feedback are encouraged by community leaders, policymakers, and funders to address health problems. Patient and consumer feedback is a critical step in scaling research applications among persons with multiple sclerosis (MS). This is important as there are physical activity guidelines for exercise in MS that have important translational utility for research, yet participation in exercise research is low among persons with MS. This may be explained by minimal engagement of persons with MS in research design. It is important to understand experiences in exercise research participation, as this will improve the translation of preliminary research into a larger phase II efficacy study.Objectives: We aimed to understand experiences of persons with MS who participated in a feasibility research study of a home-based exercise intervention grounded in current physical activity guidelines and supplemented with behavioural change modules.Methods: This study was a qualitative extension of our main feasibility study and included a basic qualitative research design based on feedback questionnaires and semi-structured interviews. Participants were recruited from those who completed our feasibility study of a 4-month home-based, exercise-training programme supplemented by behavioural strategies for promoting compliance among persons living with MS. Eighteen participants with mild to moderate disability provided study feedback. Coding and thematic analyses were performed, and questionnaire feedback and interview data were triangulated to provide meaningful data from participants.Results: Our analysis identified two main themes for improving a future phase II efficacy study. The themes were 1. Enrolment and assessments and 2. Improvements in the design and delivery of the exercise programme components.Conclusions: Exercise participation is important to improve and manage the symptoms and general health of persons with MS. Including persons with MS in the development and assessment of research will provide vital information to improve the design of future exercise studies. Capitalising on feedback from research participants and opinions from consumers of research will help researchers and clinicians deliver meaningful exercise interventions that are directly relevant to persons with MS.Implications for RehabilitationThe current physical activity guidelines for persons with MS are acceptable to persons with MS and rehabilitation professionals should prescribe these guidelines as appropriate.Consideration should be made to the use of individualised recruitment methods to optimise participation of persons with MS in exercise interventions.Rehabilitation professionals should combine behaviour change approaches with exercise interventions to optimise exercise participation in persons with MS.

The interpretation of physical activity, exercise, and sedentary behaviours by persons with multiple sclerosis.

OBJECTIVES: This study adopted a qualitative research design with directed content analysis and examined the interpretations of physical activity, exercise, and sedentary behaviour by persons with multiple sclerosis. METHODS: Fifty three persons with multiple sclerosis who were enrolled in an exercise trial took part in semi-structured interviews regarding personal interpretations of physical activity, exercise, and sedentary behaviours. RESULTS: Forty three percent of participants indicated a consistent understanding of physical activity, 42% of participants indicated a consistent understanding of exercise, and 83% of participants indicated a consistent understanding of sedentary behaviour with the standard definitions. There was evidence of definitional ambiguity (i.e., 57, 58, and 11% of the sample for physical activity, exercise, and sedentary behaviour, respectively); 6% of the sample inconsistently defined sedentary behaviour with standard definitions. Some participants described physical activity in a manner that more closely aligned with exercise and confused sedentary behaviour with exercise or sleeping/napping. CONCLUSIONS: Results highlight the need to provide and utilise consistent definitions for accurate understanding, proper evaluation and communication of physical activity, exercise, and sedentary behaviours among persons with multiple sclerosis. PRACTICE IMPLICATIONS: The application of consistent definitions may minimise ambiguity, alleviate the equivocality of findings in the literature, and translate into improved communication about these behaviours in multiple sclerosis. Implications for Rehabilitation The symptoms of multiple sclerosis can be managed through participation in physical activity and exercise. Persons with multiple sclerosis are not engaging in sufficient levels of physical activity and exercise for health benefits. Rehabilitation professionals should use established definitions of physical activity, exercise, and sedentary behaviours when communicating about these behaviours among persons with multiple sclerosis.