Physical Activity Together for People With Multiple Sclerosis and Their Care Partners: Protocol for a Feasibility Randomized Controlled Trial of a Dyadic Intervention.

BACKGROUND: Physical activity (PA) is beneficial for all people; however, people affected by multiple sclerosis (MS) find regular PA challenging. These people may include individuals with advanced disabilities and their care partners. OBJECTIVE: The objective of this study is to determine the feasibility of a dyadic PA intervention for people with advanced MS and their care partners. METHODS: This study is a randomized controlled feasibility trial of a 12-week intervention, with 1:1 allocation into an immediate intervention condition or delayed control condition. A target of 20 people with MS-care partner dyads will be included. The outcomes will be indicators of process, resources, management, and scientific feasibility. Participant satisfaction with the intervention components will be evaluated using a satisfaction survey. The subjective experience of participation in the study will be explored using semistructured interviews. RESULTS: The project is funded by the Consortium of Multiple Sclerosis Centers. This protocol was approved by the Ottawa Hospital Research Ethics Board (20190329-01H) and the University of Ottawa Research Ethics Board (H-09-19-4886). The study protocol was registered with ClinicalTrials.gov in February 2020. The findings of this feasibility trial will be disseminated through presentations at community events to engage the MS population in the interpretation of our results and in the next steps. The results will also be published in peer-reviewed journals and presented to the scientific community at national and international MS conferences. CONCLUSIONS: The data collected from this feasibility trial will be used to refine the intervention and materials in preparation for a pilot randomized controlled trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT04267185; https://clinicaltrials.gov/ct2/show/NCT04267185. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/18410.

Relationship Between Fear of Falling and Physical Activity in People Aging With a Disability.

BACKGROUND: An estimated one billion people worldwide live with some form of disability and may face many challenges as they age, including increased fall risk. Understanding the risk factors linking falls, fear of falling, and activity restriction is critical for developing effective programs to increase activity levels among persons with disabilities. OBJECTIVES: To determine if differences exist in the level of physical activity in people with different types of conditions associated with disability and to investigate if fear of falling is associated with physical activity in individuals who are aging with a long-term disability. DESIGN: Cross-sectional retrospective design. SETTING: Community. PARTICIPANTS: A convenience sample of 1812 community-dwelling individuals who had one of four diagnoses: multiple sclerosis (MS), muscular dystrophy (MD), spinal cord injury (SCI), or post-polio syndrome (PPS). METHODS: Descriptive statistics, chi-square, and analysis of variance, followed by multivariate linear regression analysis were used to examine the association between physical activity status and fear of falling. MAIN OUTCOME MEASUREMENTS: Physical activity volume and fear of falling. RESULTS: After controlling for age, sex, duration of disability, and mobility level, there was variation across diagnostic groups (P < .001). People with SCI reported greater physical activity (M = 25.19) compared to other groups (MS: M = 18.70; MD: M = 21.83; PPS: M = 15.47). Patients with PPS had the greatest concerns about falling (M = 16.08), and patients with MS had the lowest (M = 13.12). Fear of falling was associated with physical activity (P < .001), which remained significant after controlling for diagnosis type, falls history, and level of mobility. CONCLUSION: Level of physical activity appears to vary among disability diagnoses. These results highlight the importance of addressing fear of falling in people with long-term disability because fear of falling is associated with physical activity.

Multiple sclerosis is associated with low bone mineral density and osteoporosis.

OBJECTIVE: To compare measures of bone mineral density (BMD) between people with and without MS. METHODS: Using population-based administrative data from Manitoba, Canada, we identified people with MS who received BMD screening and controls who received BMD screening matched 5:1 on age, sex, region of residence, and date of BMD screening. We determined the BMD T-scores for the femoral neck, total hip, and lumbar spine and frequency of osteoporosis (defined as T-score -2.5 or lower). We compared the groups with respect to the femoral neck T-score using multivariable linear regression, adjusting for age, sex, region, disability, continuity of care, recent previous fracture, falls history, medication use, and comorbidities. We compared the odds of osteoporosis between groups using multivariable logistic regression analysis. RESULTS: We identified 783 MS cases who underwent BMD screening and 3,915 matched controls. The mean (SD) femoral BMD T-score was lower in MS cases (-1.48 [1.08]) than in matched controls (-1.12 [0.98], p < 0.001), and the prevalence of osteoporosis was higher among the MS cases (range across BMD sites: 16%-26%) vs controls (6%-15%). MS was associated with a lower femoral neck BMD T-score after accounting for covariates (ß = -0.24; 95% CI: -0.32 to -0.17) and more than 2-fold increased odds of osteoporosis (covariate-adjusted OR 2.41; 95% CI: 1.82-3.19). CONCLUSIONS: People with MS have lower BMD and a higher prevalence of osteoporosis compared with people of similar age and sex without MS. These findings indicate the importance of addressing bone health as part of comprehensive MS care.

Accuracy of FRAX® in People With Multiple Sclerosis.

People with multiple sclerosis (MS) have a higher risk of low bone mineral density (BMD), osteoporosis, and osteoporotic fractures than healthy adults. The Fracture Risk Assessment tool (FRAX® ) has been reported to underestimate fracture risk in people with MS when BMD is unknown. We tested FRAX performance for people with MS when BMD is known, and determined if MS is a risk factor for fracture independent of FRAX score. Using population-based databases in Manitoba, Canada, we identified people with MS who underwent BMD screening after MS diagnosis (n = 744) and controls matched on age, sex, and first BMD screening date (n = 3721). We calculated FRAX 10-year probabilities at the BMD screening date, and ascertained incident major osteoporotic fractures (MOF). Using Cox proportional hazards modeling we assessed the effect of MS on the hazard of MOF, adjusting for FRAX 10-year probabilities. MS cases had a higher mean FRAX 10-year probability of MOF calculated with BMD (8.32 ± 7.53) than controls (6.98 ± 5.18; p < 0.01). MS increased the risk for MOF after controlling for FRAX 10-year probability without BMD (HR 1.67; 95% confidence interval [CI], 1.29 to 2.16), and after controlling for FRAX individual risk factors (HR 1.45; 95% CI, 1.12 to 1.89). MS remained a risk factor for MOF even when controlling for FRAX 10-year probability of MOF with BMD (HR 1.48; 95% CI, 1.14 to 1.92). The FRAX 10-year probability with and without BMD underestimated the observed 10-year MOF risk in MS cases by 3% to 5%. Calibration improved when secondary osteoporosis was used to calculate FRAX without BMD. Calibration was best when the rheumatoid arthritis input was used to calculate FRAX probability along with BMD. Using secondary osteoporosis or rheumatoid arthritis as proxies for MS improves performance of FRAX and accurately predicts MOF outcomes in those with MS. This provides clinicians with a readily available approach to improve the accuracy of fracture prediction in MS. © 2019 American Society for Bone and Mineral Research.

Factors associated with receiving bone mineral density screening among people with multiple sclerosis.

BACKGROUND: Accidental falls and fall-related injuries are common among people with multiple sclerosis (MS). Fractures are the most common injury, pointing to the need to understand current practices related to bone health management in this population. We sought to identify factors associated with bone mineral density (BMD) screening, using dual-energy X-ray absorptiometry, among people with MS. METHODS: Using population-based databases from Manitoba, Canada, we identified all people with MS. Through linkage to the Manitoba Bone Mineral Density Database we subsequently determined which of these individuals underwent BMD screening following their MS diagnosis. We used Cox proportional hazards regression analysis to identify factors associated with time to BMD screening after MS diagnosis. RESULTS: Of the 5729 eligible persons with MS, most were females (n = 4032, 70.4%) and were living in an urban centre (n = 3601, 62.9%). Ten percent (n = 584) had suffered a recent fracture and nearly one-third used anticonvulsants. BMD screening occurred in 783 (13.7%). Factors associated with BMD screening were female sex (hazard ratio [HR] 5.34; 95%CI: 4.10-6.95), prolonged glucocorticoid therapy (HR 3.73; 95%CI: 2.64-5.25), breast cancer (HR 3.54; 95%CI: 2.37-5.30), recent fracture (HR 3.44; 95%CI: 2.39-4.90), continuity of care (HR 1.69; 95%CI: 1.17-2.44), greater disability (HR 1.49; 95%CI: 1.19-1.86), older age (HR/decade 1.34; 95%CI: 1.22-1.34), anticonvulsant use (HR 1.32; 95%CI: 1.06-1.63) and urban (versus rural) residence (HR 1.17; 95%CI: 1.00-1.36). CONCLUSION: Factors known to be associated with low BMD were associated with BMD screening in people with MS, but overall BMD screening rates are relatively low, suggesting that a clinically meaningful proportion of individuals with MS who have low bone mass may be missed.

Potential pathophysiological pathways that can explain the positive effects of exercise on fatigue in multiple sclerosis: A scoping review.

BACKGROUND: Fatigue is one of the most common and most disabling symptoms of multiple sclerosis (MS). It is a multidimensional and complex symptom with multifaceted origins, involving both central and peripheral fatigue mechanisms. Exercise has proven to be safe for people with MS, with cumulating evidence supporting significant reductions in fatigue. However, the potential pathophysiological pathways that can explain the positive effects of exercise on fatigue in MS remain elusive. OBJECTIVES: The objectives were, in PwMS (1) to update the knowledge on the pathophysiology underlying primary and secondary fatigue, and (2) to discuss potential pathophysiological pathways that can explain the positive effects of exercise on MS fatigue. METHODS: A comprehensive literature search of six databases (PubMed, Embase, Cochrane Library, PEDro, CINAHL and SPORTDiscus) was performed. To be included, the study had to 1) enroll participants with definite MS according to defined criteria, 2) assess explicit pathophysiological mechanisms related to MS fatigue, 3) be available in English, Danish or French, and 4) had undergone peer-review. RESULTS: A total of 234 studies fulfilled the inclusion criteria. Primary MS fatigue mainly originated from a dysfunction of central nervous system neuronal circuits secondary to increased inflammation, reduced glucose metabolism, brain atrophy and diffuse demyelination and axonal lesions. Secondary MS fatigue was linked with sleep disturbances, depression, cognitive impairments, and deconditioning. Cardiovascular, immunologic, neuroendocrine, and neurotrophic changes associated with exercise may alleviate primary MS fatigue while exercise may improve secondary MS fatigue through symptomatic improvement of deconditioning, sleep disorders, and depression. CONCLUSIONS: >30 primary and secondary pathophysiological fatigue pathways were identified underlining the multidimensionality and complexity of MS fatigue. Though the underlying key cellular and molecular cascades still have to be fully elucidated, exercise holds the potential to alleviate MS fatigue, through both primary and secondary fatigue pathways.

A scoping review of rehabilitation interventions that reduce fatigue among adults with multiple sclerosis.

OBJECTIVE: To identify and summarize available research literature about rehabilitation interventions for multiple sclerosis (MS) fatigue management. METHODS: Database searches (PubMed, EMBASE, CINAHL and PsychINFO) were conducted in October 2011 and last updated in July 2013. To be included, studies must have been published in a peer-reviewed scientific journal, written in English and included an intervention to manage MS fatigue. Effect size (ES) were calculated for the quantitative studies to estimate intervention effects, and major themes were summarized for the qualitative studies. RESULTS: Thirty-eight studies were included in this review. A variety of exercise and behavior change interventions were prescribed to adults with MS. The two most common interventions were progressive resistive training and fatigue management programs. Three exercise intervention studies and nine behavior change intervention studies with quantitative data presented significant ES. Four studies with qualitative data supported the positive impact of certain exercise and behavior change interventions. CONCLUSIONS: This review identified a variety of exercise and behavior change interventions for MS fatigue management. While the findings may provide helpful information to inform practice, future researchers need to develop and evaluate knowledge translation strategies to facilitate the application of this evidence to daily practice to advance MS rehabilitation care. IMPLICATIONS FOR REHABILITATION: Both exercise and behavior change interventions demonstrate some degree of effectiveness for managing MS fatigue. Effect sizes for exercise and behavior change interventions are similar, although the populations examined are different. Overall, evidence for exercise focuses on people who are less disabled, while evidence for behavior change interventions includes a broader population. Future researchers need to develop and evaluate knowledge translation strategies that facilitate application of evidence in daily practice in order to advance MS rehabilitation.

Falls among adults aging with disability.

OBJECTIVE: To investigate the prevalence of and risk factors for falling among individuals aging with multiple sclerosis (MS), muscular dystrophy (MD), postpolio syndrome (PPS), and spinal cord injury (SCI). DESIGN: Cross-sectional survey data from 2009 to 2010 were analyzed. We used forward logistic regression models to examine whether risk factors such as age, sex, mobility level, years since diagnosis, vision, balance, weakness, number of comorbid conditions, and physical activity could distinguish participants who reported falling from those who did not. SETTING: Surveys were mailed to community-dwelling individuals who had 1 of 4 diagnoses (MS, MD, PPS, or SCI). The survey response rate was 91%. PARTICIPANTS: A convenience sample of community-dwelling individuals (N=1862; age, 18-94y) with MS, MD, PPS, or SCI in the United States. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Self-reported fall within the last 6 months. RESULTS: Fall prevalence for people with MS (54%), MD (70%), PPS (55%), and SCI (40%). Across all 4 groups, fall rates peaked in middle age (45-64y) and among people with moderate mobility limitations. Seven risk factors differentiated participants who fell from those who did not: mobility level, imbalance, age, curvilinear age (age(2)), number of comorbid conditions, duration of diagnosis, and sex. The models differed across diagnostic groups. CONCLUSIONS: People aging with long-term physical disabilities experience unique challenges that affect their risk of falls. A better understanding of the frequency, severity, and risk factors of falls across diagnostic groups is needed to design and implement customized, effective fall prevention and management programs for these individuals.

Fall risk and incidence reduction in high risk individuals with multiple sclerosis: a pilot randomized control trial.

OBJECTIVE: To determine the feasibility of three fall prevention programs delivered over 12 weeks among individuals with multiple sclerosis: (A) a home-based exercise program targeting physiological risk factors; (B) an educational program targeting behavioral risk factors; and (C) a combined exercise-and-education program targeting both factors. DESIGN: Randomized controlled trial. SETTING: Home-based training with assessments at research laboratory. PARTICIPANTS: A total of 103 individuals inquired about the investigation. After screening, 37 individuals with multiple sclerosis who had fallen in the last year and ranged in age from 45-75 years volunteered for the investigation. A total of 34 participants completed postassessment following the 12-week intervention. INTERVENTION: Participants were randomly assigned into one of four conditions: (1) wait-list control (n = 9); (2) home-based exercise (n = 11); (3) education (n = 9); or (4) a combined exercise and education (n = 8) group. MEASURES: Before and after the 12-week interventions, participants underwent a fall risk assessment as determined by the physiological profile assessment and provided information on their fall prevention behaviors as indexed by the Falls Prevention Strategy Survey. Participants completed falls diaries during the three-months postintervention. RESULTS: A total of 34 participants completed postintervention testing. Procedures and processes were found to be feasible. Overall, fall risk scores were lower in the exercise groups (1.15 SD 1.31) compared with the non-exercise groups (2.04 SD 1.04) following the intervention (p < 0.01). There was no group difference in fall prevention behaviors (p > 0.05). CONCLUSIONS: Further examination of home-based exercise/education programs for reducing falls in individuals with multiple sclerosis is warranted. A total of 108 participants would be needed in a larger randomized controlled trial.ClinicalTrials.org #NCT01956227.

Meta-analysis of three different types of fatigue management interventions for people with multiple sclerosis: exercise, education, and medication.

Fatigue is a common symptom of multiple sclerosis (MS) with negative impacts extending from general functioning to quality of life. Both the cause and consequences of MS fatigue are considered multidimensional and necessitate multidisciplinary treatment for successful symptom management. Clinical practice guidelines suggest medication and rehabilitation for managing fatigue. This review summarized available research literature about three types of fatigue management interventions (exercise, education, and medication) to provide comprehensive perspective on treatment options and facilitate a comparison of their effectiveness. We researched PubMed, Embase, and CINAHL (August 2013). Search terms included multiple sclerosis, fatigue, energy conservation, Amantadine, Modafinil, and randomized controlled trial. The search identified 230 citations. After the full-text review, 18 rehabilitation and 7 pharmacological trials targeting fatigue were selected. Rehabilitation interventions appeared to have stronger and more significant effects on reducing the impact or severity of patient-reported fatigue compared to medication. Pharmacological agents, including fatigue medication, are important but often do not enable people with MS to cope with their existing disabilities. MS fatigue affects various components of one's health and wellbeing. People with MS experiencing fatigue and their healthcare providers should consider a full spectrum of effective fatigue management interventions, from exercise to educational strategies in conjunction with medication.

A cross-sectional study examining multiple mobility device use and fall status among middle-aged and older adults with multiple sclerosis.

PURPOSE: To document the prevalence of multiple mobility device use among adults with multiple sclerosis (MS) (≥ 55 years) and examine the association between falls status (faller/non-faller) and the number of mobility devices used. METHODS: Cross-sectional data generated through telephone interviews with 353 participants was used for this secondary analysis. Descriptive statistics were used to address the first study purpose. Multiple device use was measured by the number of devices used, which ranged from 0 (never use a cane, walker, manual wheelchair, or power wheelchair/scooter) to 4 (use all four mobility devices at least some of the time). Logistic regression analysis was used to address the second purpose, with fall status used as the dependent variable (non-fallers [<1 per year] versus fallers [≥ 1 per year]). RESULTS: Just under 60% of participants reported the use of at least two mobility devices. For each additional mobility device used, the odds of being a faller increased by 1.47 times (95% CI = 1.14-1.90). CONCLUSION: Multiple mobility device use was common and the greater number of devices used, the greater the likelihood of being a faller. To prevent falls, this association requires further research to determine directionality.

Muriel Driver Memorial Lecture 2013: Embracing our role as change agents.

BACKGROUND: Given the nature of occupational therapy philosophy and practice, it is not surprising that "change agent" has been identified as one of the seven professional roles that occupational therapists fulfill. PURPOSE: This Muriel Driver lecture examines the change agent role, what it means, and what knowledge, skills, and personal qualities are necessary to be effective. KEY ISSUES: Overall, relatively little has been written about the change agent role in the occupational therapy literature. Much of what does exist is implicit and often embedded in related topics, such as advocacy. An examination of literature from outside of occupational therapy uncovered four major themes about this role: (a) Change agents are insightful, reflective, and disciplined; (b) Charnge agents are visionary leaders and mobilizers; (c) Change agents are knowledge integrators and translators; and (d) Change agents are diplomatic interventionists who produce meaningful outcomes. These themes point to several areas of silence in the occupational therapy literature. IMPLICATIONS: Overcoming these areas of silence and moving forward will require open, challenging, and scholarly debates; reconsideration of change agent role competencies; and clear messaging that we all have the capacity to be competent and effective change agents regardless of our title or setting.

People with multiple sclerosis use many fall prevention strategies but still fall frequently.

OBJECTIVE: To compare the use of fall prevention strategies by people with multiple sclerosis (MS) who do or do not fall. DESIGN: Prospective cohort. All assessments were completed between January 2011 and December 2011. Data used in this analysis were collected as part of an observational study that included baseline assessment followed by prospective counting of falls using fall calendars. SETTING: Veterans Affairs and university medical centers. PARTICIPANTS: People with MS (N=58) of any subtype, aged 18 to 50 years, with Expanded Disability Status Scale score ≤ 6.0, recruited from MS clinics at the Portland VA Medical Center and Oregon Health and Science University and from the surrounding areas. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Measures included the occurrence of falls over 3 months and scores on the Fall Prevention Strategy Survey (FPSS) and the relations between fall prevention strategy use reported on the FPSS and falls. RESULTS: A total of 52 subjects completed the study. Of these, 33 (63%) subjects fell at least once in the 3-month period, and 19 (36%) subjects did not fall. The mean total FPSS score for the fallers was significantly higher than the nonfallers (mean ± SD, 8.1 ± 6.4 vs 4.0 ± 4.1; range, 0-20 vs 0-15; P=.007), and FPSS scores correlated with monthly fall rates (ρ=.49, P=.01). A higher proportion of fallers than nonfallers used the strategies of turning on lights at home, asking others for help, and talking to a health care professional about fall prevention. However, both groups rarely talked to a health care professional about fall prevention or asked a provider to check whether any medications might increase fall risk. CONCLUSIONS: People with MS who fall use more fall prevention strategies than those who do not fall.

Fall attributions among middle-aged and older adults with multiple sclerosis.

OBJECTIVES: To (1) explore the falls attributions of middle-aged and older adults with multiple sclerosis (MS); and (2) examine the personal, health, and MS-related factors associated with the 3 most common attributions. DESIGN: A cross-sectional, descriptive study using data collected through a telephone interview. Falls attributions were obtained through an open-ended question to elicit participants' stories about their most recent fall. Recruitment was done through a national volunteer MS registry. SETTING: Community. PARTICIPANTS: People (N=354) who were ≥55 years of age were interviewed; 313 provided a falls story. Respondents were primarily married, community-dwelling women who had been living with MS for 21 years, on average. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The 3 most common fall attributions were used as dependent variables to address the second research objective. RESULTS: A total of 14 falls attributions were identified. The most common were balance (41.5%), lower extremity malfunction (31%), and assistive technology (AT; 29.7%). Falls control was significantly associated with the balance attribution (odds ratio [OR]=.51; 95% confidence interval [CI], .29-.88), no variables were associated with lower extremity malfunction attribution, and use of multiple mobility devices was significantly associated with the AT attribution (OR=3.78; 95% CI, 2.09-6.85). CONCLUSIONS: Findings highlight the complex nature of falls among middle-aged and older adults with MS and point to the need for comprehensive fall prevention interventions for this population. Further investigation of the role that perceived control over falls plays in this population is warranted.

Performance measures rather than self-report measures of functional status predict home care use in community-dwelling older adults.

BACKGROUND: Occupational therapists frequently assess functional status (FS) to determine the home care (HC) service requirements of older adults. However, it is unclear which type of FS measure is most effective for this purpose. PURPOSE: This study investigated the predictive ability of three measures of FS (a self-report measure of usual behaviour, a self-report measure of capacity, and an observational performance measure-the Performance Assessment of Self-Care Skills [PASS]) on formal HC utilization. METHOD: A secondary analysis of 2001 Aging in Manitoba Longitudinal Study (AIM) data was conducted. FINDINGS: The odds of receiving HC within the 30-month follow-up period were 1.32 times (or 30%) higher for each increase in the number of dependent tasks based upon a standardized performance measure. The self-report measures did not predict HC utilization. IMPLICATIONS: This study suggests that standardized performance measures-in particular, the PASS-are more predictive of formal HC use in community-dwelling older adults than self-report measures.

Facilitating a teleconference-delivered fatigue management program: perspectives of occupational therapists.

BACKGROUND: Telehealth refers to the provision of health information and services across a geographical distance. Little is known about the experiences of occupational therapists using this method of service delivery. PURPOSE: The study explored the process of facilitating a telehealth intervention from the perspective of occupational therapists. METHOD: Occupational therapists completed SOAP (Subjective, Objective, Assessment, and Plan) notes after facilitating group-based, teleconference-delivered fatigue management groups to people with multiple sclerosis. Notes were also documented after therapist team meetings. All SOAP notes and field notes were subjected to thematic analysis. FINDINGS: Five major themes were identified. "Managing time" was the central theme and was facilitated by professional foundation and challenged by logistics. Managing time contributed to challenging work, which led to the realization that it can work! IMPLICATIONS: Based on study findings, the theory and research on clinical reasoning, professional development, and adult learning are relevant to developing curricula that prepare occupational therapists for using telehealth approaches in practice.

A profile of support group use and need among middle-aged and older adults with multiple sclerosis.

This study compared middle-aged and older adults with multiple sclerosis (MS, N = 1,275) according to their use of support groups and identified factors associated with perceived need. Over 64.6% (n = 824) of participants had attended a MS support group meeting at least once. Individuals who had never attended a group were more likely to reside in urban or suburban communities, report lower symptom interference, and fewer activity limitations. Women, individuals without a helper, and people with greater symptom interference were more likely to perceive a need for a support group. Findings raise questions for professionals involved in developing and implementing multiple sclerosis support groups.