Self-Report Measures of Fatigue for People With Multiple Sclerosis: A Systematic Review.

BACKGROUND AND PURPOSE: The symptom of fatigue impairs function in people with multiple sclerosis (MS). Choosing appropriate measures to assess fatigue is challenging. The purpose of this article is to report the findings of a systematic review of patient-reported fatigue measures for people with MS. METHODS: PubMed, CINAHL, and Embase databases were searched through January 2020 using terms related to fatigue and MS. Studies were included if the sample size was 30 or more or smaller samples if adequately powered, and if information about measurement characteristics (ie, test-retest reliability, content validity, responsiveness, interpretability, or generalizability) of the measure(s) could be extracted. Study quality was appraised with the 2-point COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. Data about measurement characteristics, psychometrics, and clinical utility were extracted and results were synthesized. RESULTS: Twenty-four articles met inclusion criteria with information about 17 patient-reported fatigue measures. No studies had critical methodologic flaws. Measurement characteristic data were not available for all measures. Clinical utility varied in time to complete and fatigue domains assessed. DISCUSSION AND CONCLUSIONS: Five measures had data pertaining to all properties of interest. Of these, only the Modified Fatigue Impact Scale (MFIS) and Fatigue Severity Scale (FSS) had excellent reliability, responsiveness data, no notable ceiling/floor effects, and high clinical utility. We recommend the MFIS for comprehensive measurement and the FSS for screening of subjective fatigue in people with MS.Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A443 ).

Patient perspectives on falls in persons with multiple sclerosis.

INTRODUCTION: Falls and their consequences are known to be major contributors to decreased health and well-being in older adults. Several studies suggest that fall rates are higher among individuals with disabling conditions such as multiple sclerosis (MS). However, there is a knowledge gap regarding how individuals with a disability define falls or understand their consequences. OBJECTIVE: To gain the perspective of community-dwelling adults living with MS about falls and their consequences and to understand the conditions and circumstances surrounding falls, and to identify the specific attributes of a community fall-prevention program that would facilitate participation. DESIGN: Focus groups or individual interviews were conducted with people with MS. SETTING/PARTICIPANTS: Community-dwelling adults living with MS (n = 20) (men = 8 [34.7%], mean age 63.2 years [standard deviation (SD) 5.3, range 55-75]). Average time since diagnosis was 20.6 years (SD 9.6, range 9-44). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Not applicable. RESULTS: All participants agreed that the definition of a fall required "ending up on the floor." However, the starting point differed depending on mobility ability and device use. When using the most common research definition, individuals reported an increase in their number of falls as compared to when using their personal definition. Most participants considered "fear of falling" to be different from "concern about falling." Participants wanted to learn how to fall and would not join a program with the word "fall" in the title. CONCLUSIONS: Results suggest that fall data for individuals with MS may not be reported accurately. Health care providers would get more accurate data if they provide specific definitions for falls and ask specifically about fear and concern about falling. Patient-centered programming needs to be developed that includes both how to fall and how to engage people with MS, including potential facilitators and barriers to participation.

Effect of Cognitive Demand on Functional Mobility in Ambulatory Individuals with Multiple Sclerosis.

BACKGROUND: As disease progresses, cognitive demands may affect functional mobility in individuals with multiple sclerosis (MS). The Timed Up and Go (TUG) test assesses functional mobilityin populationssuch as MS. A cognitive-demanding task can be added to the TUG test to assess its effect on functional mobility. METHODS: People with MS (n = 52) and controls (n = 57) performed three versions of the TUG test: TUG alone (TUG-alone), TUG plus reciting the alphabet (TUG-alpha), and TUG plus subtracting numbers by 3s (TUG-3s). Times to complete the TUG tests were compared among controls and three groups of participants with MS created using Expanded Disability Status Scale (EDSS) scores 0 to 3.5, 4.0 to 5.5, and 6. Differences among groups were analyzed using split-plot analysis of variance. RESULTS: Group and TUG type were significant (P < .001 for both), with no interaction effect of group × TUG type (P = .21). Mean times were 8.7, 9.4, and 11.1 seconds to perform the TUG-alone, TUG-alpha, and TUG-3s, respectively. Mean times for groups were 8.0, 8.2, 11.1, and 11.6 seconds for controls and individuals with MS and EDSS 0 to 3.5, 4.0 to 5.5, and 6, respectively. CONCLUSIONS: People with MS with an EDSS score greater than 3.5 had a statistically significant reduction in performance of the TUG test even with the addition of a simple cognitive task, which might have implications for a person's more complex everyday activities.

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.

Examining the relationship between medical diagnoses and patterns of performance on the modified Dynamic Gait Index.

BACKGROUND: In the original and modified Dynamic Gait Index (mDGI), 8 tasks are used to measure mobility; however, disagreement exists regarding whether all tasks are necessary. The relationship between mDGI scores and Centers for Medicare & Medicaid Services (CMS) severity indicators in the mobility domain has not been explored. OBJECTIVE: The study objectives were to examine the relationship between medical diagnoses and mDGI scores, to determine whether administration of the mDGI can be shortened on the basis of expected diagnostic patterns of performance, and to create a model in which mDGI scores are mapped to CMS severity modifiers. DESIGN: This was a cross-sectional, descriptive study. METHODS: The 794 participants included 140 people without impairments (control cohort) and 239 people with stroke, 140 with vestibular dysfunction, 100 with traumatic brain injury, 91 with gait abnormality, and 84 with Parkinson disease. Scores on the mDGI (total, performance facet, and task) for the control cohort were compared with those for the 5 diagnostic groups by use of an analysis of variance. For mapping mDGI scores to 7 CMS impairment categories, an underlying Rasch scale was used to convert raw scores to an interval scale. RESULTS: There was a main effect of mDGI total, time, and gait pattern scores for the groups. Task-specific score patterns based on medical diagnosis were found, but the range of performance within each group was large. A framework for mapping mDGI total, performance facet, and task scores to 7 CMS impairment categories on the basis of Rasch analysis was created. LIMITATIONS: Limitations included uneven sample sizes in the 6 groups. CONCLUSIONS: Results supported retaining all 8 tasks for the assessment of mobility function in older people and people with neurologic conditions. Mapping mDGI scores to CMS severity indicators should assist clinicians in interpreting mobility performance, including changes in function over time.

Investigating the validity of the environmental framework underlying the original and modified Dynamic Gait Index.

BACKGROUND: The modified Dynamic Gait Index (mDGI), developed from a person-environment model of mobility disability, measures mobility function relative to specific environmental demands. The framework for interpreting mDGI scores relative to specific environmental dimensions has not been investigated. OBJECTIVE: The aim of this study was to examine the person-environmental model underlying the development and interpretation of mDGI scores. DESIGN: This was a cross-sectional, descriptive study. METHODS: There were 794 participants in the study, including 140 controls. Out of the total study population, 239 had sustained a stroke, 140 had vestibular dysfunction, 100 had sustained a traumatic brain injury, 91 had gait abnormality, and 84 had Parkinson disease. Exploratory factor analysis was used to investigate whether mDGI scores supported the 4 environmental dimensions. RESULTS: Factor analysis showed that, with some exceptions, tasks loaded on 4 underlying factors, partially supporting the underlying environmental model. LIMITATIONS: Limitations of this study included the uneven sample sizes in the 6 groups. CONCLUSIONS: Support for the environmental framework underlying the mDGI extends its usefulness as a clinical measure of functional mobility by providing a rationale for interpretation of scores that can be used to direct treatment and infer change in mobility function.

Evidence for the validity of the modified dynamic gait index across diagnostic groups.

BACKGROUND: The modified Dynamic Gait Index (mDGI) measures the capacity to adapt gait to complex tasks utilizing 8 tasks and 3 facets of performance. The measurement stability of the mDGI in specific diagnostic groups is unknown. OBJECTIVE: This study examined the psychometric properties of the mDGI in 5 diagnostic groups. DESIGN: This was a cross-sectional, descriptive study. METHODS: A total of 794 participants were included in the study: 140 controls, 239 with stroke, 140 with vestibular dysfunction, 100 with traumatic brain injury, 91 with gait abnormality, and 84 with Parkinson disease. Differential item functioning analysis was used to examine the comparability of scores across diagnoses. Internal consistency was computed using Cronbach alpha. Factor analysis was used to examine the factor loadings for the 3 performance facet scores. Minimal detectable change at the 95% confidence level (MDC95%) was calculated for each of the groups. RESULTS: Less than 5% of comparisons demonstrated moderate to large differential item functioning, suggesting that item scores had the same order of difficulty for individuals in all 5 diagnostic groups. For all 5 patient groups, 3 factors had eigenvalues >1.0 and explained 80% of the variability in scores, supporting the importance of characterizing mobility performance with respect to time, level of assistance, and gait pattern. LIMITATIONS: There were uneven sample sizes in the 6 groups. CONCLUSIONS: The strength of the psychometric properties of the mDGI across the 5 diagnostic groups further supports the validity and usefulness of scores for clinical and research purposes. In addition, the meaning of a score from the mDGI, regardless of whether at the task, performance facet, or total score level, was comparable across the 5 diagnostic groups, suggesting that the mDGI measured mobility function independent of medical diagnosis.

Expanding the scoring system for the Dynamic Gait Index.

BACKGROUND: The Dynamic Gait Index (DGI) measures the capacity to adapt gait to complex tasks. The current scoring system combining gait pattern (GP) and level of assistance (LOA) lacks clarity, and the test has a limited range of measurement. OBJECTIVE: This study developed a new scoring system based on 3 facets of performance (LOA, GP, and time) and examined the psychometric properties of the modified DGI (mDGI). DESIGN: A cross-sectional, descriptive study was conducted. METHODS: Nine hundred ninety-five participants (855 patients with neurologic pathology and mobility impairments [MI group] and 140 patients without neurological impairment [control group]) were tested. Interrater reliability was calculated using kappa coefficients. Internal consistency was computed using the Cronbach alpha coefficient. Factor analysis and Rasch analysis investigated unidimensionality and range of difficulty. Internal validity was determined by comparing groups using multiple t tests. Minimal detectable change (MDC) was calculated for total score and 3 facet scores using the reliability estimate for the alpha coefficients. RESULTS: Interrater agreement was strong, with kappa coefficients ranging from 90% to 98% for time scores, 59% to 88% for GP scores, and 84% to 100% for LOA scores. Test-retest correlations (r) for time, GP, and LOA were .91, .91, and .87, respectively. Three factors (time, LOA, GP) had eigenvalues greater than 1.3 and explained 79% of the variance in scores. All group differences were significant, with moderate to large effect sizes. The 95% minimal detectable change (MDC95) was 4 for the mDGI total score, 2 for the time and GP total scores, and 1 for the LOA total score. LIMITATIONS: The limitations included uneven sample sizes in the 2 groups. The MI group were patients receiving physical therapy; therefore, they may not be representative of this population. CONCLUSIONS: The mDGI, with its expanded scoring system, improves the range, discrimination, and facets of measurement related to walking function. The strength of the psychometric properties of the mDGI warrants its adoption for both clinical and research purposes.

Participation in community walking following stroke: the influence of self-perceived environmental barriers.

BACKGROUND: Community walking is limited among survivors of stroke; however, the contributing factors are not clearly understood. OBJECTIVE: This study examined the association of features in the environment with frequency of community walking following stroke. DESIGN: An observational study design was used, with frequency of community walking data collected prospectively. METHOD: Thirty survivors of stroke (mean age=67 years; mean months since stroke=40), and 30 older adults without stroke (mean age=68 years) participated. Frequency of community walking (number of trips, walking-related activities [WRA], and the ratio of WRA to trips) and satisfaction were measured using self-report. The Environmental Analysis of Mobility Questionnaire (EAMQ) was used to determine frequency of encounter with versus avoidance of environmental features during community walking. Negative binomial and linear regression models were used to analyze the association of environmental features with measures of community walking. RESULTS: Survivors of stroke reported reduced community walking and fewer encounters with and greater avoidance of features within 8 dimensions of the environment compared with a control group of adults without stroke. Following stroke, avoidance of features in some environmental dimensions was associated with frequency of community walking as measured by number of trips, number of WRA, and the ratio of WRA to trips. Environmental features explained little of the variability in community walking. LIMITATIONS: Limitations included a small sample size and limited diversity among participants. This study examined only physical features in the environment and did not include other environmental factors, such as social support, which may influence participation. CONCLUSIONS: Avoidance of features within some, but not all, environmental dimensions was associated with self-reported frequency of community walking following stroke, suggesting that some environmental features may limit community walking more than others.

Understanding falls in multiple sclerosis: association of mobility status, concerns about falling, and accumulated impairments.

BACKGROUND: Falls in people with multiple sclerosis (MS) are a serious health concern, and the percentage of people who restrict their activity because of concerns about falling (CAF) is not known. Mobility function and accumulated impairments are associated with fall risk in older adults but not in people with stroke and have not been studied in people with MS. OBJECTIVE: The purposes of this study were: (1) to estimate the percentage of people who have MS and report falling, CAF, and activity restrictions related to CAF; (2) to examine associations of these factors with fall status; and (3) to explore associations of fall status with mobility function and number of accumulated impairments. DESIGN: A cross-sectional survey was conducted. METHODS: A total of 575 community-dwelling people with MS provided information about sociodemographics, falls, CAF, activity restrictions related to CAF, mobility function, and accumulated impairments. Chi-square statistics were used to explore associations among these factors. RESULTS: In all participants, about 62% reported CAF and about 67% reported activity restrictions related to CAF. In participants who did not experience falls, 25.9% reported CAF and 27.7% reported activity restrictions related to CAF. Mobility function was associated with fall status; participants reporting moderate mobility restrictions reported the highest percentage of falls, and participants who were nonwalkers (ie, had severely limited self-mobility) reported the lowest percentage. Falls were associated with accumulated impairments; the participants who reported the highest percentage of 2 or more falls were those with 10 impairments. LIMITATIONS: This cross-sectional study relied on self-reported falls, mobility, and impairment status, which were not objectively verified. CONCLUSIONS: Both CAF and activity restrictions related to CAF were common in people with MS and were reported by people who experienced falls and those who did not. The association of fall status with mobility function did not appear to be linear. Fall risk increased with declining mobility function; however, at a certain threshold, further declines in mobility function were associated with fewer falls, possibly because of reduced fall risk exposure.

Understanding physical factors associated with participation in community ambulation following stroke.

PURPOSE: This study examined the association between impaired physical function and participation in community ambulation following stroke. We hypothesised that participation would be significantly less following stroke, and that physical impairments would be associated with participation. METHOD: Using a case-control design 30 survivors of stroke aged 45 and older and 30 controls provided health status information and a self-report of participation in community ambulation (number of trips and walking-related activities (WRA) reported prospectively over a 12-day period). The association of physical impairments (strength, range of motion, sensation, muscle tone, vision, and activity limitations (gait speed and performance on complex walking tasks)) with level of participation was analysed using negative binomial regression and goodness of fit. RESULTS: Participants included 30 individuals with and 30 without stroke, average age 68 years, majority were Caucasian women. Average time since stroke was 40 months. Participation in survivors of stroke was characterised by fewer trips and WRA and lower satisfaction (p < 0.001). Usual gait speed, balance, muscle strength and muscle length were impaired (p < 0.001) in stroke vs. controls, and associated with number of trips and WRA (p < 0.05). However, these factors explained less than very little of the variance in participation. CONCLUSIONS: While individual factors were associated with level of participation, results failed to accurately predict participation in community ambulation following stroke. Other factors, such as depression, cognition and self-efficacy may be stronger determinants of participation.

The effects of a home-based exercise program on physical function in frail older adults.

BACKGROUND AND PURPOSE: Exercise has been shown to improve physical function in frail older adults; however, the effects of exercise may vary with degree of frailty, the format and intensity of the exercise intervention, and level of supervision. This cohort study describes the effects of participation in a 6-week home-based exercise program on measures of physical function as well as exercise-related beliefs, including exercise self-efficacy and outcomes expectation, in frail older adults. METHODS: Participants were 72 frail older adults who participated in a 6-week home-based exercise program supervised by graduate physical therapy students. Individualized home-based exercises targeted strength, flexibility, balance, gait, and cardiovascular fitness. Physical function was measured at baseline and after completion of the 6-week exercise program using the Functional Fitness Test (Biceps Curl, Chair Stand, 8-Foot Up and Go) and velocity on a 4-m walk. Measures of exercise-related beliefs included the Self-Rated Abilities for Health Practices Scale and Exercise Outcome Expectations. OUTCOMES: Participation in the 6-week home-based exercise program was associated with improvements in measures of physical function, including an average increase of 3 repetitions (35%) on the biceps curl, 2.4 repetitions (59%) on the chair stand, and an average increase of 0.17 m/s (33%) in gait velocity. Average decrease in Timed Up and Go test scores was 5.7 seconds (26%). Scores for exercise-related beliefs also improved (self-efficacy average increase was 7 points [40%], and average increase in outcome expectations was 3 [47%]). DISCUSSION: A supervised 6-week, multidimensional home-based exercise program was safe and associated with improvements in physical and exercise-related belief outcome measures in this cohort study of frail older adults.