Perceptions of exercise and restless legs syndrome: Results from a nationwide survey.

Restless legs syndrome is a prevalent, sensorimotor sleep disorder temporarily relieved by movement, with evidence of symptomatic improvement with regular exercise. The present study describes perceptions of the effects of exercise on symptoms of restless legs syndrome. Participants (N = 528) completed a mixed-methods (i.e. numerical and narrative), nationwide survey including items assessing personal experiences with exercise and restless legs syndrome (both positive and negative), as well as restless legs syndrome diagnosis, restless legs syndrome severity, and demographic and clinical characteristics. Responses varied widely on specific experiences with exercise, but a higher percentage of participants indicated positive experiences with exercise than those who reported negative experiences (72%-40%, respectively) with exercise. Further, 54% of respondents reported that exercise only improves restless legs syndrome, while 24% reported exercise only worsens symptoms. Participants described that any abrupt change in exercise routine would almost always elicit restless legs syndrome symptoms (e.g. hiking for a long time, stopping an exercise routine), and that a consistent pattern of exercise improved restless legs syndrome symptoms with an overall beneficial effect on the frequency of symptomatic bouts. Participants further described time of day as impactful for their exercise experience, with > 50% indicating morning exercise improves symptoms and evening exercise worsens symptoms. Participants described several questions that they wanted answered regarding the evidence for exercise in restless legs syndrome and specific exercise prescription recommendations. The present study describes information crucial to the creation of stakeholder-informed health promotion programs for individuals with restless legs syndrome to optimize personalized treatment plans that could prevent and manage symptoms.

Stakeholder involvement in the optimization of a patient-centered exercise intervention for people with restless legs syndrome.

STUDY OBJECTIVES: Previous research supports exercise as a behavioral approach to manage symptoms of restless legs syndrome (RLS); however, completion rates in exercise studies are low. This study obtained key stakeholder feedback from people with RLS to modify and optimize a 12-week, evidence-based exercise program for RLS. METHODS: Participants with RLS (n = 513) completed a nationwide survey to provide feedback on the necessity, interest, feasibility, and efficacy of the program as well as perceived barriers and proposed modifications to improve the exercise program. RESULTS: Most respondents (67%) expressed the need for an exercise program designed specifically for people with RLS and 64% were interested in the program. Only 6% of participants thought the program would not be well tolerated and 6% responded that it would likely exacerbate symptoms. However, only 58% said they would be likely to participate in the program if it was available to them locally. Key barriers to participation were (1) accessibility, (2) personal factors, (3) trustworthiness, and (4) fear of injury, illness, or symptom exacerbations. Respondents highlighted modification considerations for the individualization of exercise features, adaptations for specific impairments/personal factors, inclusion of flexibility and balance exercises, and flexibility for more home-based activities. CONCLUSIONS: Interest in the program was driven by the desire to reduce medications and improve overall quality of life. Appropriately educated and trained exercise providers knowledgeable about RLS are integral to buy-in from stakeholders. This study provides an imperative step in clinical research that can increase the success of subsequent implementation efforts and may accelerate the adoption of exercise programs into practice. CITATION: Cederberg KLJ, Sikes EM, Mignot E. Stakeholder involvement in the optimization of a patient-centered exercise intervention for people with restless legs syndrome. J Clin Sleep Med. 2024;20(4):535-543.

Physical activity and functional limitations in pediatric multiple sclerosis: Are fatigue and depression confounding variables?

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 (r = 0.45), fatigue (r = -0.28), and depression (r = -0.32). Functional limitations were associated with fatigue (r = -0.45) and depressive symptoms (r = -0.53). MVPA was significantly correlated with functional limitations (ß= 0.27, p = 0.04) even after accounting for general fatigue (ß= 0.08, p = 0.64) and depressive symptoms (ß= -0.40, p = 0.03) 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.

Do fatigue and depression have a bivariate association with device-measured physical activity behavior in persons with multiple sclerosis?

PURPOSE: This study examined the bivariate association between fatigue and depression symptoms and physical activity behavior in persons with multiple sclerosis (MS). METHODS: The sample of adults with MS completed the Fatigue Severity Scale (FSS) and the Hospital Anxiety and Depression Scale (HADS) and wore a waist mounted accelerometer during waking hours for 7 days. We categorized participants as having elevated fatigue and depression based on cut-points for the FSS (i.e., 4+ as indicative of severe fatigue) and the HADS (i.e., 8+ as indicative of elevated depressive symptoms). We used a two-way multivariate analysis of variance (MANOVA) to examine the contribution of fatigue and depression to volume and pattern of sedentary, light (LPA) and moderate-to-vigorous physical activity (MVPA). RESULTS: Results indicated no bivariate association between fatigue and depression and measures of physical activity behavior. The MANOVA indicated there was a significant association between fatigue and MVPA (F = 2.30, p = 0.032) and steps/day (F = 13.6, p < 0.001), independent of depression symptoms. There was no association between depression symptoms and physical activity behavior. CONCLUSIONS: This study demonstrated an interrelation between fatigue symptoms and MVPA and steps/day in MS, independent of depression symptoms, and this should be considered in the future design and delivery of physical activity interventions in MS.IMPLICATIONS FOR REHABILIATIONFatigue and depression are prevalent and burdensome symptoms of multiple sclerosis (MS).These symptoms can collectively worsen psychological and functional outcomes in MS.Fatigue symptoms may impact ambulatory physical activity to a greater degree than depression symptom status in persons with MS.Fatigue is an important consideration when designing behavior change interventions targeted at promoting physical activity in persons with MS.

Physical Activity and Sedentary Behavior Patterns Across Weekdays and Weekend Days in Youth With Multiple Sclerosis and Controls.

Background: This study quantified and compared weekday and weekend patterns of device-measured physical activity (PA) and sedentary behavior between youth with pediatric multiple sclerosis (MS) and controls for the purpose of informing future PA behavior change interventions. Methods: Participant data were obtained from 3 ongoing observational studies, and the sample included 40 participants with pediatric MS and 41 controls. Light PA (LPA), moderate to vigorous PA (MVPA), and sedentary behavior data were collected using activity monitors (ActiGraph LLC) over 1 week. The main analysis involved a 2-way mixed factor analysis of variance with group as a between-subjects factor (pediatric MS vs control) and day as a within-subjects factor (weekday vs weekend day). Results: There was no group by day interaction from the analysis of variance for percentage of activity monitor wear time spent in LPA, MVPA, or sedentary behavior. There was no effect of group for LPA, MVPA, or sedentary behavior. There was an effect of day of week on percentage of day spent in LPA, MVPA, and sedentary behavior. Conclusions: These results suggest that youth with pediatric MS and controls were less physically active and more sedentary on weekends than on weekdays, but there were no differences between groups in PA and sedentary behavior overall or by day of the week. Physical activity interventions may be more successful by initially targeting weekend day activity.

Social Cognitive Theory variables as correlates of physical activity in fatigued persons with multiple sclerosis.

BACKGROUND: There is interest in the application of behavioral interventions based on theory for increasing physical activity among adults with multiple sclerosis (MS). To date, researchers have applied theory such as Social Cognitive Theory (SCT) for identifying correlates of physical activity that can then inform the design and delivery of behavioral interventions. Such research often has been conducted in heterogeneous samples of persons with MS without a focus on those with a specific symptom, such as fatigue, that may be targeted by physical activity behavioral interventions. To that end, this study examined SCT variables (i.e., self-efficacy, barriers, outcome expectations, goal-setting, planning, social support, and functional limitations) as correlates of physical activity in persons with MS who self-reported elevated fatigue. METHODS: Persons with MS (N=210; aged 49.6[13.2] years) who ambulated with or without assistance participated in the study. Participants completed self-report measures of fatigue, physical activity, and SCT variables and wore an ActiGraph GT3X+ accelerometer on a belt around the waist for 7 days. The accelerometer data were processed and delineated into time spent in light and moderate-to-vigorous physical activity (MVPA) based on MS-specific cut-points. We generated groups of fatigued (n=134) and non-fatigued (n=76) persons with MS based on the cut-off score of 4 for the Fatigue Severity Scale. RESULTS: There were differences in physical activity and SCT variables between fatigued and non-fatigued persons with MS. Among those with fatigue, functional limitations (ρ=0.52), self-efficacy (ρ=0.31), and goal-setting (ρ=0.25) were associated with device-measured MVPA, and all SCT variables except outcome expectations were associated with self-reported physical activity. The regression analyses indicated self-efficacy, functional limitations, and goal-setting as significant correlates of MVPA in those with fatigue. CONCLUSION: Self-efficacy, goal-setting, and social support may be important targets of SCT-based behavioral interventions for increasing physical activity among persons with MS who have fatigue.

Demographic, clinical, and symptomatic correlates of subjective sleep quality in adults with multiple sclerosis.

BACKGROUND: This study examined a comprehensive set of demographic, clinical, and symptomatic variables as correlates of subjective sleep quality in adults with multiple sclerosis (MS). METHODS: Participants with MS(N=485) completed the Pittsburgh Sleep Quality Index(PSQI), a demographics and clinical characteristics questionnaire, the Patient Determined Disease Steps Scale(PDDS), the Fatigue Severity Scale, and the Hospital Anxiety and Depression Scale. We conducted bivariate Spearman's rho (ρ) correlation analyses and multiple linear regression analysis for identifying variables associated with PSQI scores. RESULTS: Participants had a mean (standard deviation) age of 55.4 (12.6) years and were mostly female (78%) with a median [interquartile range] PDDS of 2.0[3.0]. Higher levels of fatigue (ρ=0.32), more symptoms of anxiety (ρ=0.39) and depression (ρ=0.36), younger age (ρ=-0.12), lower income status (ρ=-0.13), shorter MS disease duration (ρ=-0.11), being in a minority group (ρ=0.09), and being unemployed (ρ=-0.10) were associated with worse sleep quality. There were no significant associations between gender, marital status, parental status, education level, disability status, or MS disease type and sleep quality. The overall regression model accounted for 26.3% of variance in sleep quality (F[8,229.8]=20.25) and there were significant coefficients for anxiety(ß=0.25), fatigue(ß=0.18), depression(ß=0.16), and employment status(ß=-0.12), but not disease duration, age, race, or income level. DISCUSSION: Participants with higher levels of anxiety, fatigue, and depression and who were unemployed reported worse sleep quality in our sample of adults with MS. These results may identify specific subgroups of the MS population that experience more sleep problems, and therefore are in greatest need for interventions designed to improve sleep impairment.

Do physical activity and social cognitive theory variable scores differ across symptom cluster severity groups in multiple sclerosis?

BACKGROUND: Persons with multiple sclerosis (MS) experience co-occurring symptoms termed "symptom clusters" that can be distinguished based on mild, moderate, or severe symptom severity termed "symptom cluster severity." Physical activity (PA) may be an approach for improving co-occurring symptoms. OBJECTIVE: To examined if PA and social cognitive theory (SCT) variables differed by symptom cluster groups, and if associations between SCT variables and PA were moderated by symptom cluster groups. METHODS: Secondary analysis of participants with MS (N = 205) enrolled in a cross-sectional study. Trend analyses were conducted to determine if device-measured and self-reported PA and SCT variables (i.e., social support, self-efficacy, outcome expectations, goal setting, planning, and impediments) decreased with increased symptom cluster severity. Spearman rho rank-order correlations were conducted between PA measures and SCT variables within each symptom cluster group. RESULTS: Linear trend analyses indicated that self-reported PA declined with increased symptom cluster severity groups (F = 4.90,p = 0.03). Linear trend analyses indicated significant differences among symptom cluster severity groups in social support (F = 31.43,p = 0.001), exercise self-efficacy (F = 22.55,p = 0.001), barrier self-efficacy (F = 11.48,p = 0.001), outcome expectations (F = 6.98,p = 0.009), and impediments (F = 34.41,p = 0.001). There were differential associations of moderate magnitude in correlations, such that three SCT variables were associated with PA in the mild group (i.e., self-efficacy, goal setting and planning), two in the moderate group (i.e., social support and goal setting), and four in the severe group (i.e., self-efficacy, outcome expectations, planning, and social support). CONCLUSIONS: Further research is warranted examining the use of SCT-based behavior change techniques for promoting PA and improving symptom clusters in persons with MS.

Physical activity and self-reported sleep quality in adults with multiple sclerosis.

BACKGROUND: There is a fourfold higher prevalence of sleep problems in multiple sclerosis (MS) than the general population. OBJECTIVE: This study examined cross-sectional associations among device-measured sedentary and physical activity behavior with perceived sleep quality in adults with MS. METHODS: Adults with MS (N = 290) completed the Pittsburgh Sleep Quality Index (PSQI) and wore an accelerometer for seven days providing a measure of time spent in sedentary behavior, light physical activity (LPA), and moderate-to-vigorous physical activity (MVPA) using MS-specific cut-points. We conducted multiple linear regression analysis to identify the independent contributions of variables for explaining PSQI scores. RESULTS: The overall model accounted for 2% of the variance in global PSQI scores, and MVPA was significantly and independently associated with global PSQI scores (ß = â”€0.123; p = 0.045; partial r = â”€0.118) when accounting for average wear time, sedentary behavior, and time spent in LPA. There were no other significant associations with PSQI global score. CONCLUSIONS: Our results suggest that time spent in MVPA may be associated with better sleep quality in adults with MS, but adults with MS do not spend sufficient time in physical activity. Researchers should evaluate these relationships in longitudinal study designs and behavior change interventions, as physical activity may provide a unique opportunity to improve sleep quality outcomes.

Symptom clusters and quality of life in persons with multiple sclerosis across the lifespan.

PURPOSE: To describe symptom clusters based on severity of co-occurring symptoms among adults with multiple sclerosis (MS) by age groups and to further examine symptom clusters as a correlate of quality of life (QOL) by age groups. METHODS: This cross-sectional study enrolled persons with MS between 20 and 79 years of age who completed measures of fatigue, depression, anxiety, sleep quality, and QOL using the 36-Item Short Form Health Survey. Bivariate correlation and partial correlation analyses examined associations among symptoms, QOL, and MS characteristics. K-means cluster analyses determined symptom clusters among the full sample and pre-determined age groups (i.e., 20-39, 40-59, and 60-79). One-way ANOVAs examined differences in QOL among clusters for the overall sample and by age groups. RESULTS: Among the overall sample of 205 participants, symptoms were significantly correlated with QOL and three distinct clusters were identified and differentiated by the magnitude of symptom experience (i.e., mild, moderate, and severe). Results were consistent among young and middle-aged adults; however, among older adults two severe sleep problem clusters were identified that were distinguished by moderate versus severe fatigue, depression, and anxiety. ANOVAs among the overall sample indicated that the three symptom clusters varied significantly for both physical component scores, F(2, 202) = 12.03, p < .001, η2 = .10, and mental component scores, F(2, 202) = 137.92, p < .001, η2 = .58; severe symptom cluster was associated with worse QOL. Patterns in the age subgroup ANOVAs were consistent. CONCLUSIONS: Given the strong association between severity of symptom clusters and QOL, approaches for targeting co-occurring symptoms are critically needed.

Walking and cognitive performance in adults with multiple sclerosis: Do age and fatigability matter?

BACKGROUND: Co-occurring walking and cognitive performance deficits are debilitating consequences of multiple sclerosis (MS) that worsen with age. However, it is unknown if fatigability influences such age-related worsening of walking and cognitive performance. OBJECTIVE: This cross-sectional study examined possible age-related differences in walking-related motor fatigability (incremental six-minute-walk (6MW) performance) and cognitive fatigability (incremental Symbol Digit Modalities Test (SDMT) performance) in adults with MS. METHODS: 196 adults with MS were categorized into age-groups: younger (20-39 years; n = 53), middle-aged (40-59 years; n = 89), and older (60-79 years; n = 54), and completed the 6MW and SDMT. Age-group differences in incremental 6MW and SDMT performance, controlling for disability status, were examined using separate, mixed-factor ANCOVAs. RESULTS: There were no statistically significant age-group-by-time interactions on walking-related motor or cognitive fatigability when controlling for disability. However, there were significant main effects of time on incremental 6MW (p = 0.01) and SDMT (p < 0.01) performance indicating the presence of walking-related motor and cognitive fatigability, respectively, collapsed across age-groups. CONCLUSION: Fatigability does not exert a primary influence on age-related worsening of walking and cognitive neuroperformance outcomes among adults with MS. This suggests that walking-related motor fatigability and cognitive fatigability may not be optimal targets for mitigating age-related declines in ambulation and cognition among adults with MS.

Quantitative Synthesis of Timed 25-Foot Walk Performance in Multiple Sclerosis.

OBJECTIVE: To provide a meta-analysis of articles that have included the timed 25-foot walk (T25FW) in persons with multiple sclerosis (MS), quantify differences in T25FW scores between those with MS and controls without MS, and quantify differences between categories of disability status and clinical disease courses within MS. DATA SOURCES: The literature search was conducted using 4 databases (Google Scholar, PubMed, Cumulative Index to Nursing and Allied Health, EBSCO Host). We searched reference lists of published articles to identify additional articles. STUDY SELECTION: A systematic literature search identified articles reporting average T25FW performance in seconds between those with MS and controls without MS, between those with MS who had mild and moderate and/or severe disability status, and between relapsing-remitting and progressive clinical courses of MS. DATA EXTRACTION: Information was extracted and categorized based on reported data: comparisons of controls without MS and MS, comparisons of mild and moderate and/or severe MS based on study-defined Expanded Disability Status Scale groups, and comparisons of relapsing-remitting and progressive MS clinical courses. DATA SYNTHESIS: We performed a random effects meta-analysis to quantify differences between groups as estimated by effect sizes (ESs). We expressed the differences in Cohen d as well as the original units of the T25FW (ie, seconds). CONCLUSIONS: There was a large difference in T25FW performance in MS compared with controls without MS (ES=-0.93, mean difference=2.4s, P<.01). Persons with moderate and/or severe disability walked substantially slower compared with mild disability (ES=-1.02, mean difference=5.4s, P<.01), and persons with progressive courses of MS walked substantially slower than relapsing-remitting MS (ES=-1.4, mean difference=13.4s, P<.01).

The priorities of neurologists for exercise promotion in comprehensive multiple sclerosis care.

BACKGROUND: Fewer than 20% of persons with multiple sclerosis (MS) engage in sufficient amounts of exercise for experiencing health and wellness benefits. Neurologists have a powerful and influential relationship among patients, highlighting the potential for the patient-provider interaction to be a gateway for promoting exercise behavior. Neurologists, however, are under-supported and under-resourced for promoting exercise in comprehensive MS care. The purpose of this study was to determine the priorities of neurologists for exercise promotion among patients in comprehensive MS care and, where possible, provide suggestions for how each priority may be addressed in practice. METHODS: Priority areas were identified through deductive content analysis of 20 semi-structured interviews with practicing neurologists. RESULTS: Seven priority areas were identified regarding promotion of exercise among patients in comprehensive MS care. These included 1). How do I fit exercise promotion into a patient's appointment? 2). What resources should I give my patients about exercise? 3). What are the benefits of exercise for people with MS? 4). What training can I do to be better informed about exercise? 5). What are the prescriptions/guidelines for exercise among persons with MS? 6). What kind of services can I rely on to support me in promoting and supporting exercise behavior? 7). How do I negotiate reimbursement and insurance restrictions when I promote exercise? CONCLUSIONS: This research sets an agenda regarding approaches for exercise promotion among patients with MS through interactions with neurologists in comprehensive care settings.

Changes in Cognitive Performance With Age in Adults With Multiple Sclerosis.

BACKGROUND: Cognitive impairment is one of the most common consequences of multiple sclerosis (MS), yet there is a shortage of data regarding how cognition changes during the life span of individuals with MS. This information is of increasing importance given the growing proportion of older adults with MS. OBJECTIVE: To study possible changes in cognitive function in correlation with increasing age in individuals with MS. METHODS: Participants (N=129) were recruited and a priori allocated into one of three age groups (young, middle-aged, and older). All participants completed the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) during a single laboratory testing session. The BICAMS measures cognitive processing speed as well as verbal and visuospatial learning and memory. RESULTS: A multivariate analysis of variance indicated that cognitive function significantly differed by age group, and these differences were not explained by amount of physical activity, years of education, years since diagnosis, or race. Older adults displayed significantly worse cognitive processing speed than young and middle-aged adults. The older and middle-aged adults also demonstrated significantly worse visuospatial learning and memory than the younger adults. Effect sizes indicated that cognitive processing speed and verbal learning and memory were more affected in late adulthood than early adulthood, whereas visuospatial learning and memory was affected similarly in early and late adulthood. CONCLUSIONS: Older adults with MS demonstrated significant impairments in cognitive function compared to young and middle-aged adults with MS. Future studies should determine the predictors of cognitive decline in this age cohort.

Physical activity and walking performance across the lifespan among adults with multiple sclerosis.

BACKGROUND: There is consistent evidence of an association between physical activity and walking performance in persons with multiple sclerosis (MS). To date, this relationship has been predominantly examined in young and middle-aged adults rather than in the rapidly-growing population of older adults with MS who often times have greater walking problems and are less physically active. This study examined whether physical activity was differentially associated with walking performance across three age groups of young (20-39 years), middle-aged (40-59 years), and older (60-79 years) adults with MS. METHODS: The sample included 124 persons with MS who attended one testing session and provided demographic information, completed the Timed 25-Foot Walk (T25FW) and the Six Minute Walk (6MW) as measures of walking speed and walking endurance, respectively, and wore an accelerometer for a 7-day period. RESULTS: Trend analysis indicated light physical activity did not significantly differ with increasing age; however, moderate-to-vigorous physical activity (MVPA), walking speed, and walking endurance declined with increasing age. Partial spearman's rank-order correlations between physical activity and walking outcomes that controlled for disease duration, race, and ambulatory disability within each age group indicated that the relationship between MVPA and walking performance was strong among older adults with MS (prs for MVPA and T25FW: young = -0.01, middle-aged = -0.16, older = -0.63*; prs for MVPA and 6MW: young = 0.10, middle-aged = 0.08, older = 0.68*). CONCLUSION: Interventions targeting MVPA may be an appropriate approach for managing walking impairment, particularly in older adults with MS.

Walking endurance in multiple sclerosis: Meta-analysis of six-minute walk test performance.

BACKGROUND: The 6-minute walk (6 MW) is the most commonly applied measure of endurance walking capacity in persons with multiple sclerosis (MS); however, we are not aware of a quantitative synthesis of 6 MW performance in MS. RESEARCH QUESTION: We undertook a meta-analysis quantifying the overall magnitude of difference in 6 MW performance between MS and healthy controls (HCs), and then within MS as a function of disability status. We further examined possible moderator variables of 6 MW performance. METHODS: The systematic search was conducted for articles that included the 6 MW in persons with MS and involved comparison groups (i.e., HCs or MS disability subgroups (i.e., mild vs moderate-to-severe disability status)). The mean and standard deviation of the distance traveled during the 6 MW as well as sample sizes were entered into Comprehensive Meta-Analysis software and we estimated the overall effect size (Cohen's d) using a random effects model and examined categorical variables as possible moderators (e.g., instruction protocol, provision of encouragement, method of distance measurement, and course description). RESULTS: Thirty-four studies met inclusion criteria with a total sample size of 3204 persons (MS: 2683; HC: 521) yielding 42 total comparisons. Persons with MS walked a shorter distance than HCs (mean difference = -177.2 ±â€¯19.1 m) with a large effect size (d = - 1.87). Persons with mild disability walked further than those with moderate-to-severe disability (mean difference = 185.19 ±â€¯9.2 m) with a large effect (d = 1.83). The categorical variables of provision of encouragement and course layout moderated the effect of MS and course layout moderated the effect of disability status on 6 MW performance. SIGNIFICANCE: This meta-analysis of 6 MW performance defines mean difference in 6 MW performance in MS compared with HCs and provides an estimate of the disease-related effect of MS on endurance walking capacity for application within clinical research and practice.

A Qualitative Study of Exercise and Physical Activity in Adolescents with Pediatric-Onset Multiple Sclerosis.

BACKGROUND: Pediatric-onset multiple sclerosis (POMS) accounts for up to 5% of all multiple sclerosis (MS) cases. Of note, the existing literature regarding physical activity and POMS is sparse, and there is limited insight about the lived experiences of individuals with POMS regarding physical activity, including perceptions of its benefits, barriers, facilitators, and promotion. METHODS: We conducted a qualitative exploration of physical activity perceptions and experiences and of preferences for a physical activity intervention in eight persons with POMS. Using semistructured interviews and interpretative phenomenological analysis, we crafted numerous themes that provide new knowledge of physical activity experiences and preferences in this population. RESULTS: The adolescent participants believed that physical activity would be beneficial and important but further believed that it can often be boring and may worsen POMS symptoms. Participants described adequate symptom management, social support, time, and opportunity as facilitators of physical activity, and lack of social support, time, and opportunity as hindrances. The interviewees described that components of a future intervention should focus on education regarding specific exercises, outcomes, and safety during exercise and provide opportunities for social engagement with other individuals with POMS. CONCLUSIONS: This qualitative study provides novel findings regarding the perceptions and experiences of physical activity in POMS. An important step in crafting an understanding of physical activity behavior in POMS, this study serves to inform the development and delivery of physical activity behavioral interventions.