Validation of scores from a telephone administered multiple sclerosis walking scale-12 in persons with multiple sclerosis.

BACKGROUND: The Multiple Sclerosis Walking Scale-12 (MSWS-12) has typically been delivered through paper-and-pencil or computer-based administration. PURPOSE: This study examined the validity of inferences from scores derived via a telephone administration of the MSWS-12 applied as part of screening of participants with walking dysfunction into a clinical trial of exercise training in MS. METHOD: The MSWS-12 was administered on two occasions separated by approximately 2 weeks through the telephone and then in-person (i.e., computer-based administration). Participants further completed the Patient Determined Disease Steps (PDDS) scale, timed 25-foot walk (T25FW), six-minute walk (6MW), Modified Fatigue Impact Scale (MFIS), and Multiple Sclerosis Impact Scale-29 (MSIS-29), and underwent a neurological exam for generating an expanded disability status scale (EDSS) score. The primary set of data (Full Sample) for analyses included all persons who passed the telephone screening for inclusion with MSWS-12 scores between 25 and 75 (N = 374). The secondary set of data (Truncated Sample) included only persons with MSWS-12 scores between 25 and 75 for both the telephone and computer administrations of the MSWS-12 (N = 248). RESULTS: The results in the Full Sample indicated a difference in overall and item levels scores between the telephone and computer data collections, and the computer version had higher internal consistency and stronger unidimensionality. Nevertheless, MSWS-12 scores from both modes of administration had comparable correlations with the T25FW, 6MW, EDSS, PDDS, MFIS, and MSIS-29, but the correlation between the two MSWS-12 administrations did not approach unity. There was a systematic difference in scores between telephone and computer administrations across levels of walking dysfunction based on a Bland-Altman plot, and the difference was predicted by MFIS physical, 6MW, and EDSS scores. The comparison of results between the Full and Truncated Samples suggested that the primary analysis might have been influenced by the larger range of scores on the computer than telephone administrations of the MSWS-12. CONCLUSION: The telephone administration of the MSWS-12 provides an efficient and cost-effective measure of walking dysfunction in persons with MS.

Preferred Behavior Change Techniques for Physical Activity Interventions among Persons Newly Diagnosed with Multiple Sclerosis: A Qualitative Study.

There is increasing interest by researchers and clinicians in behavior change interventions for promoting physical activity in persons newly diagnosed with MS. Ideally, such interventions require the delivery of behavior change techniques (BCTs) based on theory and the selection of BCTs might further require tailoring for this MS subpopulation. The current study examined BCTs preferred by persons newly diagnosed with MS for informing the design and delivery of physical activity behavior change interventions in early-stages of MS. We recruited and interviewed 20 persons newly diagnosed with MS (i.e., disease duration ≤ 2 years). The interviews were conducted online via video conferencing platform and followed a semi-structured script. During the interviews, participants provided opinions regarding an ideal physical activity behavior change program, and the opinions of participants were mapped with the Intervention Functions of the Behavior Change Wheel, BCTs, and BCT groups. Ten frequently mentioned BCTs were identified as preferred strategies for a physical activity behavior change intervention among persons newly diagnosed with MS. These BCTs focused on providing social support, skills and strategies for physical activity performance and regulation, and knowledge on benefits of physical activity in MS. This research provides a refined list of BCTs that can be included when designing tailored physical activity behavior change interventions for persons newly diagnosed with MS.

Physical Activity Levels and Social Cognitive Theory Correlates among Adults with Crohn's Disease: Preliminary Results from a Cross-Sectional Analysis.

There is increasing research and clinical interest in physical activity (PA) as an adjuvant therapy for improving health outcomes among persons with Crohn's disease. To date, little is known regarding PA behavior and its cognitive and behavioral correlates in Crohn's disease. Thus, we assessed self-reported PA and its social cognitive theory (SCT) correlates in a sample of persons with Crohn's disease. Data on demographic and clinical characteristics, disease activity, leisure-time PA, and SCT variables were collected from 30 participants with Crohn's disease (90% White, 60% female) through an online survey. SCT variables assessed included exercise self-efficacy, social support, outcome expectations, goal setting, and planning. Analyses involved comparing PA levels and SCT survey scores using independent sample t-tests and non-parametric bivariate correlations. The majority of participants were in clinical remission (60%) and over half (57%) were classified as physically active, yet the mean PA level was lower than normative values for adults. Females (n = 18) and participants who reported previous surgery for Crohn's disease (n = 18) were almost twice as physically active as male participants and those without a history of Crohn's disease-related surgery, respectively (p's < 0.05). Overall, participants who reported greater exercise goal setting behaviors had higher levels of PA (rs = 0.34; p < 0.05). These findings highlight lower overall levels of PA in persons with Crohn's disease, and exercise goal setting represents a potential target of behavior change interventions for increasing PA in this population.

Physical Activity in Individuals Newly Diagnosed With Multiple Sclerosis Through the Lens of the COM-B Model.

BACKGROUND: Physical activity (PA) is a promising intervention for disease modification and symptom management in multiple sclerosis (MS); however, there is a lack of research focusing on PA behavior change interventions for persons newly diagnosed with MS. Such PA behavior change interventions should be developed based on a strong empirical foundation of understanding the behavior and its determinants (ie, what to target for changes to occur). To that end, this qualitative study examined factors explaining PA in persons newly diagnosed with MS and identified potential targets for future behavior change intervention development based on the Capability-Opportunity-Motivation-Behavior (COM-B) model. METHODS: Twenty individuals diagnosed with MS within the past 2 years underwent one-on-one semistructured interviews using questions developed based on the COM-B model. Data were analyzed using reflective thematic analysis, and the identified themes were then mapped with the COM-B model. RESULTS: Factors explaining PA in the study sample were identified across the COM-B components. The typical factors include knowledge and skills to sufficiently engage in PA with appropriate approaches, ability to adapt and navigate through new environmental and social difficulties after diagnosis, and motivation resulting from a combination of factors, such as outcome expectation, belief of capabilities, role/identity, reinforcement, and emotions. CONCLUSIONS: The COM-B model was applied successfully in this study to understand PA behavior and identify potential targets for behavior change in individuals newly diagnosed with MS. Future behavior change interventions should consider addressing these factors to generate effective PA behavior change in this population.

Impact of the COVID-19 Pandemic on Physical Activity among Mostly Older, Overweight Black Women Living in the Rural Alabama Black Belt.

Despite well-documented global declines in physical activity (PA) during the COVID-19 pandemic, little is known regarding the specific impact among underserved, rural Alabama counties. This is concerning as this region was already disproportionately burdened by inactivity and related chronic diseases and was among the hardest hit by COVID-19. Thus, the current study examined the effect of COVID-19 on PA in four rural Alabama counties. An ancillary survey was administered between March 2020 and August 2021 to the first cohort (N = 171) of participants enrolled in a larger PA trial. Main outcomes of this survey included the perceived impact of COVID-19 on PA, leisure-time PA, and social cognitive theory (SCT) constructs at 3 months. Almost half of the participants reported being less active during the pandemic (49.7%) and endorsed that COVID-19 made PA more difficult (47.4%), citing concerns such as getting sick from exercising outside of the home (70.4%) and discomfort wearing a face mask while exercising (58%). Perceived COVID-19 impact on PA was significantly associated with education, household dependents, and gender (p's < 0.05). More women, parents, and college graduates reported that the COVID-19 pandemic made PA more difficult. Overall, there were no significant associations between PA, SCT constructs, or perceived COVID-19 impact on PA scores at 3 months. While the pandemic made PA difficult for many participants, these barriers were not associated with leisure-time PA levels or related theoretical mechanisms of action, which bodes well for the success of our ongoing intervention efforts and the resiliency of these communities.

Intervention fidelity and adaptation in a multi-site exercise training intervention for adults with multiple sclerosis.

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.

Informing the development of a mobile application for the physical activity guidelines in multiple sclerosis: a qualitative, pluralistic approach.

PURPOSE: The uptake of Physical Activity Guidelines (PAGs) for adults with multiple sclerosis (MS) may be facilitated through mHealth solutions such as a mobile app. To date, there is limited information regarding preferred features of an app for people with MS. We explored desired features for an app that supports physical activity behaviour among persons with MS. MATERIALS AND METHODS: Using a pluralistic analytical approach, we conducted a secondary qualitative analysis on a portion of data collected from an earlier study to explore (i) what persons with MS wanted in an app based on the PAGs and (ii) how the PAG-based app should facilitate behaviour change. The data were subjected to deductive, content analysis to identify populous mentions of desired PAG-based app elements. We then used inductive, semantic reflexive thematic analysis to further explore the opinions and evaluations of participants. RESULTS: Participants (n = 16) perceived features such as activity tracking, incentives for completing milestones, and customization as both triggers for doing PA and supporting engagement with the app. Participants desired a personalized PA prescription based on mobility and fitness level, expert feedback based on data entered in the app, and an exercise library with a range of evidence-based content. Participants insisted the app be backed by a solid scientific foundation and that accessibility of personal data be controlled by the user. CONCLUSIONS: This study identifies several design considerations for an app based on the PAGs. The results suggest a simple, trustworthy, and evidence-based app that focuses on helping persons with MS reach the PAGs.

mHealth technologies could be an empowering and inclusive method of supporting physical activity uptake among persons with multiple sclerosis (MS).Knowledge is currently lacking regarding how mHealth technologies, such as mobile apps, can facilitate uptake of Physical Activity Guidelines for Adults with MS (PAGs).People with MS (N = 16) desired an app grounded in a solid scientific foundation, but then translated into simple, accessible, personalized physical activity guidelines that focused on achieving activity goals.Motivational, functional, and personalization strategies should be included in the development of an app based on the PAGs.

The Impact of COVID-19 Lockdown Restrictions on Exercise Behavior Among People With Multiple Sclerosis Enrolled in an Exercise Trial: Qualitative Interview Study.

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.

Physical Activity in Adults With Crohn's Disease: A Scoping Review.

Background: As it becomes increasing clear that managing Crohn's disease (CD) requires more than medical treatment alone, further research to identify second-line approaches for managing CD and its symptoms such as physical activity (PA) are necessary to address this public health concern. Methods: We conducted a scoping review of descriptive, cross-sectional, and experimental studies to synthesize evidence regarding PA rates, determinants, health consequences, and interventions specifically in adults with CD. Adhering to the Preferred Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) guidelines, published literature was searched to identify articles that examined PA or exercise in adults with CD. Results: Twenty-eight articles met inclusion criteria: 13 included a cross-sectional design, 4 a case-control design, 2 cohort designs, and 9 intervention designs. Adults with CD appear to be similar to somewhat less physically active than the general population, though self-report and objective rates of PA vary widely by geographical location. PA may be associated with the reduced risk of future active disease in adults with CD in clinical remission, as well as improve health-related quality of life, fatigue, cardiorespiratory fitness, and depression. Preliminary findings from interventional studies demonstrate that moderate-intensity PA is feasible, safe, and may have beneficial effects on disease activity. Conclusions: Overall, the benefits that can be accrued from regular PA are quite diverse; however, a substantially larger body of evidence is needed to provide firmer conclusions on the health benefits of PA that might underlie exercise-related changes in function and disease activity in adults with CD.

Design and Rationale for the Deep South Interactive Voice Response System-Supported Active Lifestyle Study: Protocol for a Randomized Controlled Trial.

BACKGROUND: The rates of physical inactivity and related cancer incidence and mortality are disproportionately high in the Deep South region in the United States, a rural, medically underserved region with a large African American population compared with the rest of the nation. Given this region's lower rates of literacy and internet access, interactive voice response (IVR) system-automated telephone-based interventions have the potential to help overcome physical activity intervention barriers (literacy, internet access, costs, and transportation) but have yet to be extended to rural, underserved populations, such as in the Deep South. Thus, extensive formative research is being conducted to develop and beta test the Deep South IVR System-Supported Active Lifestyle intervention in preparation for dissemination in rural Alabama counties. OBJECTIVE: This paper aims to describe the design and rationale of an ongoing efficacy trial of the Deep South IVR System-Supported Active Lifestyle intervention. METHODS: A two-arm randomized controlled trial will be conducted to compare a 12-month physical activity intervention versus a wait-list control condition in 240 underactive adults from 6 rural Alabama counties. The Deep South IVR System-Supported Active Lifestyle intervention is based on the Social Cognitive Theory and includes IVR-automated physical activity-related phone counseling (daily in months 0-3, twice weekly in months 4-6, and weekly in months 7-12) and support from local rural county coordinators with the University of Alabama O'Neal Comprehensive Cancer Center Community Outreach and Engagement Office. The primary outcome is weekly minutes of moderate- to vigorous-intensity physical activity (7-day physical activity recall; accelerometry) at baseline, 6 months, 12 months, and 18 months. Rural Active Living Assessments will be conducted in each rural county to assess walkability, assess recreational amenities, and inform future environment and policy efforts. RESULTS: This study was funded in March 2019 and approved by the institutional review board of the University of Alabama at Birmingham in April 2019. As of February 2020, start-up activities (hiring and training staff and purchasing supplies) were completed. Study recruitment and assessments began in September 2020 and are ongoing. As of February 2021, a total of 43 participants have been enrolled in Dallas County, 42 in Sumter County, and 51 in Greene County. CONCLUSIONS: IVR-supported phone counseling has great potential for addressing physical activity barriers (eg, culture, literacy, cost, or transportation) and reducing related rural health disparities in this region. TRIAL REGISTRATION: ClinicalTrials.gov NCT03903874; https://clinicaltrials.gov/ct2/show/NCT03903874. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/29245.

"How Come You Sent Me the Canadian One?" Application and Uptake of the Canadian Physical Activity Guidelines for Adults With Multiple Sclerosis in the United States.

The uptake and benefits of the Canadian Physical Activity Guidelines for Adults with Multiple Sclerosis (PAGs) have been validated, but there is limited understanding regarding the knowledge, needs, and preferences of people with multiple sclerosis (MS) for implementing the PAGs outside of clinical research. The authors conducted online, semistructured interviews with 40 persons with MS from across the United States seeking information on awareness of and potential approaches for increasing the uptake of the PAGs. They identified first impressions and potential approaches for increasing the uptake of the PAGs through inductive, semantic thematic analysis. Participants perceived the PAGs as a good introduction for structured exercise but desired more information on how to meet the PAGs. Participants further believed that modifying the PAGs for inclusivity and applying a multifaceted approach for dissemination and implementation may increase uptake of exercise behavior. Physical activity research in MS should include both analyzing the effects of exercise and the unique challenges faced by persons with MS in putting the PAGs into practice.

Is Symptomatic Fatigue Associated With Physical Activity and Sedentary Behaviors Among Persons With Multiple Sclerosis?

Background. Fatigue is a debilitating symptom in multiple sclerosis (MS) that may be associated with reduced physical activity and increased sedentary behavior. Objective. This study examined the associations among fatigue and device-measured physical activity and sedentary behavior in people with MS. Methods. The participants (n = 252) completed the Patient Determined Disease Steps (PDDS) and Fatigue Severity Scale (FSS) and wore a waist-mounted accelerometer for 7 days. Participants were divided into 2 groups based on fatigue severity as measured by the FSS scale. We compared percentage of wear time spent in sedentary, light physical activity (LPA), and moderate to vigorous physical activity (MVPA) between the 2 groups. Results. Persons in the fatigued group (FSS score ≥ 4) spent a greater percentage of time in sedentary behavior (P = .004) and a lower percentage of time in LPA (P = .035). Persons in the fatigued group further spent a lower percentage of time in nontransformed MVPA (P < .001) and square-root-transformed MVPA (P < .001) than persons in the nonfatigued group. When controlling for PDDS scores and years of education, there were no longer significant differences between groups in sedentary behavior, LPA, or transformed MVPA values; the difference in nontransformed MVPA was still statistically significant but likely the result of nonnormally distributed data. Conclusion. The present study suggests that factors other than fatigue might be associated with physical activity and sedentary behavior in MS, and this group might benefit from focal behavioral interventions that take into account mobility status in persons with MS who have fatigue.

Rationale and design of the STEP for MS Trial: Comparative effectiveness of Supervised versus Telerehabilitation Exercise Programs for Multiple Sclerosis.

BACKGROUND: We propose a Phase III trial that compares the effectiveness of an exercise training program delivered in a facility-based setting with direct, in-person supervision or a home-based setting with remote supervision via telerehabilitation for improving walking performance in persons with multiple sclerosis(MS) who have walking dysfunction and mobility disability. METHODS/DESIGN: The study was developed with stakeholder engagement and is a multi-site trial that follows a 2-stage, randomized choice design. The trial compares the effectiveness of a 16-week evidence-based, individualized exercise program delivered in a supervised, facility-based setting versus a remotely coached/guided, home-based setting using telerehabilitation in physically inactive and cognitively intact people with MS who have walking dysfunction and mobility disability(N = 500). The primary outcome is walking speed. The secondary outcomes are walking endurance, disability status, and patient-reported outcomes of physical activity, walking impairment, fatigue, and quality of life. The components of the exercise program itself are similar between the groups and follow the Guidelines for Exercise in MS protocol. This includes a program manual, exercise prescription, exercise equipment, social-cognitive theory materials including newsletters, logs, and calendars, and one-on-one behavioral coaching by exercise specialists with background in MS. The main difference between groups is the coaching approach and setting for delivering the exercise training program. The outcomes will be collected by treatment-blinded assessors at baseline(week 0), mid-intervention(week 8), post-intervention(week 16), and follow-up(week 52). DISCUSSION: The proposed study will provide evidence for the effectiveness of a novel, widely-scalable program for delivering exercise training in persons with MS who have walking dysfunction and mobility disability.

Energy Expenditure and Enjoyment During Active Video Gaming Using an Adapted Wii Fit Balance Board in Adults with Physical Disabilities: Observational Study.

BACKGROUND: Individuals with physical disabilities have fewer opportunities to participate in enjoyable physical activity. One option for increasing physical activity is playing active video games (AVGs); however, many AVGs are inaccessible or offer limited play options. OBJECTIVE: This study aimed to examine energy expenditure and enjoyment in adults with mobility impairment during AVG play using off-the-shelf (OTS) and adapted versions of the Wii Fit balance board (Nintendo). METHODS: During visit 1, participants completed a functional assessment and the familiarization period. During visit 2, metabolic data were collected during a 20-minute baseline and four 10-minute bouts of Wii Fit Plus game play, with two bouts on each of the boards. During the resting period, participants completed the Physical Activity Enjoyment Scale (PACES). Statistical analyses were computed using SPSS software. Data were analyzed separately for individuals who were able to play while standing on both boards (StdStd); those who could not play while standing on the OTS board, but were able to play while standing on the adapted board (aStd); and those who could only play while sitting on the adapted board (aSit). RESULTS: Data were collected for 58 participants (StdStd, n=17; aStd, n=10; aSit, n=31). The sample included 31 men and 27 women with a mean age of 41.21 (SD 12.70) years. Energy expenditure (metabolic equivalent [MET]) during game play was significantly greater than that during rest for all players. Only 17 participants (StdStd group) were able to play using the OTS board. During game play on the adapted board, the average MET values for the two game sets were 2.261 (SD 0.718) kcal/kg/hour and 2.233 (SD 0.751) kcal/kg/hour for the aSit group, 3.151 (SD 1.034) and 2.990 (SD 1.121) for the aStd group, and 2.732 (SD 0.655) and 2.777 (SD 0.803) for the StdStd group. For game play on the adapted board, self-reported ratings of perceived exertion on a 0-10 scale suggested greater exercise intensity levels, with median scores ranging from moderate (3) to very hard (7). The PACES scores indicated that all players enjoyed using the adapted board, with a median score of 4 on a 5-point scale. CONCLUSIONS: The adapted Wii Fit balance board provided an opportunity for individuals with mobility impairments, including wheelchair users, to engage in AVG. All participants were able to utilize the adapted controller and enjoyed the AVG activity. Although the average MET values achieved during AVG represented light-intensity exercise (<3 METs), 16% of sitting participants and 41% of standing participants achieved moderate-intensity exercise (3-6 METs) in at least one of the games. Factors not accounted for, which may have influenced the intensity of exercise, include game selection, limited familiarization period, and discomfort wearing the COSMED portable metabolic system for measurement of oxygen consumption. Accessible AVG controllers offer an innovative approach to overcome various barriers to participation in physical activity. The next steps include assessment of an AVG intervention using an adapted board gaming controller on health and fitness outcomes. TRIAL REGISTRATION: ClinicalTrials.gov NCT02994199; https://clinicaltrials.gov/ct2/show/NCT02994199 (Archived by Webcite at http://www.webcitation.org/75fc0mN39).