Prevalence and Associated Clinical Characteristics of Walking-Related Motor, Cognitive, and Fatigability in Progressive Multiple Sclerosis: Baseline Results From the CogEx Study.

BACKGROUND: People with progressive multiple sclerosis (PMS) present motor (eg, walking) and cognitive impairments, and report fatigue. Fatigue encompasses fatigability which is objectively measured by the capacity to sustain a motor or cognitive task. OBJECTIVE: To investigate the prevalence of walking and cognitive fatigability (CF) and the associated clinical characteristics in a large sample of PMS patients. METHODS: PMS patients (25-65 years old) were included from 11 sites (Europe and North America), having cognitive impairment (1.28 standard deviation below normative data for the symbol digit modality test [SDMT]). Walking fatigability (WF) was assessed using the distance walk index (DWI) and CF using the SDMT (scores from the last 30 seconds compared to the first 30 seconds). Additional measures were: cognitive assessment-Brief International Cognitive Assessment for multiple sclerosis (MS), cardiorespiratory fitness, 6-minute walk, physical activity, depressive symptoms, perceived fatigue-Modified Fatigue Impact Scale (MFIS), MS impact-MSIS-29, and walking ability. RESULTS: Of 298 participants, 153 (51%) presented WF (DWI = -28.9 ± 22.1%) and 196 (66%) presented CF (-29.7 ± 15%). Clinical characteristics (EDSS, disease duration, and use of assistive device) were worse in patients with versus without WF. They also presented worse scores on MSIS-29 physical, MFIS total and physical and reduced physical capacity. CF patients scored better in the MSIS-29 physical and MFIS psychosocial, compared to non-CF group. Magnitude of CF and WF were not related. CONCLUSIONS: Half of the cognitively-impaired PMS population presented WF which was associated with higher disability, physical functions, and fatigue. There was a high prevalence of CF but without strong associations with clinical, cognitive, and physical functions. TRIAL REGISTRATION NUMBER: The "CogEx-study," www.clinicaltrial.gov identifier number: NCT03679468.

Between-Day Reliability of the Gait Characteristics and Their Changes During the 6-Minute Walking Test in People With Multiple Sclerosis.

BACKGROUND: Gait characteristics and their changes during the 6-minute walking test (6MWT) in people with multiple sclerosis (pwMS) have been described in the literature, which one may refer to as walking fatigability in the body function level of the International Classification of Functioning, Disability, and Health. However, whether these metrics are reliable is unknown. OBJECTIVE: To investigate the between-day reliability of the gait characteristics and their changes in pwMS and healthy controls (HCs). METHODS: Forty-nine pwMS (EDSS 4.82 ± 1.22 and 54.7 ± 9.36 years) and 23 HCs (50.6 ± 6.1 years) performed the 6MWT, as fast as possible but safely while wearing Inertial Measurement Units. Gait characteristics were measured in the pace, rhythm, variability, asymmetry, kinematics, coordination, and postural control domains and were obtained in intervals of 1 minute during the 6MWT. In addition, gait characteristics change in the last minute compared with the first minute were calculated for all gait variables using a fatigability index (ie, distance walking index). The intraclass correlation coefficient (ICC), Bland-Altman Plots, and Standard error of measurement were applied to investigate reliability. RESULTS: Reliability of gait characteristics, minute-by-minute, and for their changes (ie, using the fatigability index) ranged from poor to excellent (pwMS: ICC 0.46-0.96; HC: ICC 0.09-0.97 and pwMS: ICC 0-0.72; HC: ICC 0-0.77, respectively). CONCLUSION: Besides coordination, at least 1 variable of each gait domain showed an ICC of moderate or good reliability for gait characteristics changes in both pwMS and HC. These metrics can be incorporated into future clinical trials and research on walking fatigability.Clinical Trial Registration: NCT05412043.

Intermediate outcomes for clinical trials of multiple sclerosis rehabilitation interventions: Conceptual and practical considerations.

BACKGROUND: Rehabilitation is an essential health care service and a critical component of comprehensive multiple sclerosis (MS) care. OBJECTIVE: As part of a 2-day meeting hosted by the International Advisory Committee on Clinical Trials in MS in December 2022, a panel initiated a discussion on the conceptual and practical issues related to selecting intermediate outcomes for clinical trials of MS rehabilitation interventions. RESULTS: The overarching goal of rehabilitation - optimal functioning - was acknowledged as a complex biopsychosocial phenomenon that varies with patient priorities and environmental context. This complexity means that multiple causal pathways and potential intermediate outcomes must be carefully considered during the design of clinical trials in MS rehabilitation that aim to improve functioning. In addition, practical issues must be considered such as psychometric properties of outcome measures, measure type, and characteristics of the target population, including severity of dysfunction. CONCLUSION: This article uses the International Classification of Functioning, Disability and Health as a foundation for determining relevant intermediate outcomes for clinical trials of MS rehabilitation interventions.

Effects of Peripheral Cooling on Upper Limb Tremor Severity and Functional Capacity in Persons with MS.

Upper limb intention tremor in persons with multiple sclerosis (pwMS) affects the ability to perform activities of daily life and is difficult to treat. The study investigated the effect of peripheral upper limb cooling on tremor severity and functional performance in MS patients with intention tremor. In experiment 1, 17 patients underwent two 15 min cooling conditions for the forearm (cold pack and cryomanchet) and one control condition. In experiment 2, 22 patients underwent whole arm cooling for 15 min using multiple cold packs. In both experiments, patients were tested at four time points (pre- and post-0, -25 and -50 min cooling) on unilateral tasks of the Test Evaluant les Membres supérieurs des Personnes Agées (TEMPA), Fahn's tremor rating scale (FTRS), Nine Hole Peg Test (NHPT). In experiment 1, the mean FTRS ranged from 13.2 to 14.1 across conditions. A two-way ANOVA showed mainly time effects, showing that cooling the forearm significantly reduced the FTRS, the performance on the NHPT, and three out of four items of the TEMPA, mostly independent of the cooling modality. In experiment 2, the mean FTRS was 13.1. A repeated measures ANOVA showed that cooling the whole arm reduced the FTRS and time needed to execute two out of four items of the TEMPA. These effects occurred immediately after cooling lasting at least 25 min. Cooling the whole upper limb led to a clinically noticeable effect on tremor severity and improved functional performance, which was pronounced during the first half-hour after cooling.

Changes in physiotherapy services and use of technology for people with multiple sclerosis during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has led to reorganization or reduction of neurorehabilitation services for people with multiple sclerosis (PwMS). The aim of this study was to explore the changes in the organizational framework and technology usage in physiotherapy services for PwMS during the COVID-19 pandemic. METHODS: This international cross-sectional survey study was designed, developed, and disseminated by RIMS European Network for Best Practice and Research in Multiple Sclerosis Rehabilitation. Physiotherapists from nine countries (Australia, Belgium, Czech Republic, Ireland, Israel, Italy, Norway, Spain, Turkey) who provided physiotherapy services to PwMS, were invited to complete an online survey to compare physiotherapy delivery to PwMS prior to and during the pandemic period. RESULTS: The survey was completed by 215 physiotherapists. Accessibility, the average number, length and perceived effectiveness of physiotherapy sessions provided to PwMS were significantly reduced during the COVID-19 pandemic (p=0.001). Physiotherapists increased the advice of mobile apps, recorded videos for rehabilitation and exercise websites during the pandemic (p<0.001) while the use of telerehabilitation and virtual reality technology did not change. CONCLUSION: There was of a reduction in the number, duration and perceived effectiveness of rehabilitation sessions for people with multiple sclerosis during the COVID-19 pandemic while use of remote technologies for physiotherapy did not change. To ensure the continuity of physiotherapy for PwMS with complex healthcare needs also during pandemics, the provision of guidelines and training in telehealth technologies in professional education becomes crucial.

Physical Activity in Multiple Sclerosis: Meeting the Guidelines at the Time of the COVID-19 Pandemic.

BACKGROUND AND PURPOSE: Regular physical activity (PA) helps to reduce the severity of physical and mental symptoms and improves quality of life in people with multiple sclerosis (PwMS). Based on current evidence and expert opinion, the recent multiple sclerosis guidelines recommend at least 150 minutes/week of PA. This study presents the results of a survey analyzing whether and how PwMS met the guidelines before and during the pandemic. METHODS: We developed and disseminated an international online survey between December 2020 and July 2021, investigating changes in self-reported PA type, duration, frequency, and intensity due to the COVID-19 outbreak in PwMS with differing disability levels. RESULTS: Among respondents (n = 3810), 3725 were eligible. The proportion of those who conducted at least one activity decreased with increasing disability level at both time points (pre and during). Overall 60% of respondents met the guidelines before the pandemic (mild: 64.43%; moderate: 51.53%; severe: 39.34%; χ 2(2) = 109.13, P < 0.01); a reduction of approximately 10% occurred during the pandemic in all disability groups (mild: 54.76%; moderate: 42.47%; severe: 29.48%; χ 2(2) = 109.67, P < 0.01). Respondents with higher disability participated more in physical therapy and less in walking, cycling, and running at both time points. Most respondents reported practicing PA at a moderate intensity at both time points; frequency and duration of sessions decreased as disability level increased. DISCUSSION AND CONCLUSIONS: The percentage of those meeting the guidelines reduced with increasing disability level and during the pandemic. PA type and intensity varied widely across the disability categories. Interventions accounting for disability level are required to enable more PwMS to reap the benefits of PA.Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content 1, http://links.lww.com/JNPT/A415 ).

Cognitive-motor telerehabilitation in multiple sclerosis (CoMoTeMS): study protocol for a randomised controlled trial.

BACKGROUND: The management of cognitive impairment is an important goal in the treatment of multiple sclerosis (MS). While cognitive rehabilitation has been proven to be effective in improving cognitive performance in MS, research in the elderly indicates a higher effectiveness of combined cognitive-motor rehabilitation. Here, we present the protocol of a randomised controlled clinical trial to assess whether a combined cognitive-motor telerehabilitation programme is more effective in improving working memory than only cognitive or motor training. METHODS/DESIGN: The CoMoTeMS-trial is a two-centre, randomised, controlled and blinded clinical trial. A total of 90 patients with MS will receive 12 weeks of either a combined cognitive-motor telerehabilitation programme or only cognitive or motor training. The primary outcome is a change in the digit span backwards. Secondary outcomes are other cognitive changes (Brief International Cognitive Assessment for Multiple Sclerosis and Backward Corsi), Expanded Disability Status Scale (EDSS), 6-Min Walk Test, 25-Foot Walk Test, 9-Hole Peg Test, anxiety and depression, fatigue, quality of life, cognitive and physical activity level, electroencephalography and magnetic resonance imaging of the brain. DISCUSSION: We hypothesise that the improvement in digit span backwards after 12 weeks of treatment will be significantly higher in the group treated with the combined cognitive-motor telerehabilitation programme, compared to the groups receiving only cognitive and only motor training. TRIAL REGISTRATION: ClinicalTrials.gov NCT05355389. Registered on 2 May 2022.

Impact of Covid-19 emergency on rehabilitation services for Multiple Sclerosis: An international RIMS survey.

BACKGROUND: Covid-19 pandemic greatly impacted on the healthcare systems worldwide with negative consequences on several aspects of clinical populations. For neurological chronic conditions such as Multiple Sclerosis (MS), rehabilitation activities have been suspended or postponed during the pandemic. Rehabilitation is crucial for people with MS (PwMS) because it promotes recovery from relapses and maximizes opportunities for social participation. To better understand the impact of Covid-19 emergency on rehabilitation services for MS, the European network for rehabilitation in MS (RIMS) disseminated a survey to healthcare professionals (HPs) and representatives of the MS rehabilitation services (RSs), to explore the two different perspectives on the delivery of rehabilitation in usual circumstances and during the Covid-19 emergency. METHODS: The online survey was distributed from July 9th to September 20th, 2020. Besides general information on the responders (e.g. location of center, and memebership to RIMS), information was collected on usual service delivery (e.g. settings, specialities, and types of treatment), the impact of Covid-19 circumstances (e.g. restrictions, use of personal protective equipment, and impact on work), and the use of technologiesin rehabilitation. RESULTS: Twenty-two representatives of MS rehabilitation services (RSs)and 143 health care professionals (HPs) responded. Most of RSs and HPs worked in services specialized for MS including a mixture of all usual rehabilitation settings (i.e. inpatient, outpatient and community setting). The majority of services adopted a multidisciplinary framework, including physical therapy, occupational therapy, social service, speech and language therapy, psychological support, dietary interventions, medical management, vocational rehabilitation and cognitive rehabilitaton. Overall, most of responders indicated they did not use technologies in their practice (e.g. for treatment or assessment). However, depending on the type of technology a low-to-medium percentage of responders declared to use some technologies before Covid-19 crisis (5-55% for RSs and 12-53% for HPs) and a low percentage planned the use after pandemic (0-14% for RSs and 1-10% for HPs). Moreover, for the responders the most feasible interventions deliverable through tele-rehabilitation were psychological support and dietary interventions, with psychological support considered the most necessary intervention to be remotely implemented. Moderate feasibility (30-60%) was reported for hands-off interventions (e.g. aerobic exercise and cognitive rehabilitation) whereas low feasibility (<30%) was reported for hands-on interventions. Feasibility was especially low when tools were used that are not adaptable at-home (e.g. hyperbaric oxygen therapy). CONCLUSION: The Covid-19 pandemic has stimulated the MS healthcare professionals to find new solutions to deliver alternative interventions to PwMS. In this context, the role of telemedicine is crucial to continue rehabilitation services at home, and limit exposure to infection. However, most of healthcare professionals have not incorporated the use of technologies. Therefore, the implementation of digital health solutions in the clinical practice needs more attention towards education on the potentials of technologies for rehabilitation and simplification of the national healthcare system reimbursement procedures for the rehabilitation technologies use.

Impact of the COVID-19 Pandemic on Physical Activity and Associated Technology Use in Persons With Multiple Sclerosis: An International RIMS-SIG Mobility Survey Study.

OBJECTIVE: To investigate the impact of the COVID-19 pandemic on physical activity in persons with multiple sclerosis (PwMS). DESIGN: Multicenter international online survey study. SETTING: The survey was conducted within 11 participating countries. Each country launched the survey using online platforms from May to July 2021. PARTICIPANTS: This was an electronic survey study targeting PwMS (N=3725). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: The survey ascertained physical activity performance and its intensity, the nature of the activities conducted, and the use of technology to support home-based physical activity before and during the pandemic. RESULTS: A total of 3725 respondents completed the survey. Prepandemic, the majority (83%) of respondents reported being physically active, and this decreased to 75% during the pandemic. This change was significant for moderate- and high-intensity activity (P<.0001). Activities carried out in physiotherapy centers, gyms, or pools decreased the most. Walking was the most frequently performed activity prepandemic (27%) and increased during the pandemic (33%). A total of 24% of those inactive during the pandemic had no intention of changing their physical activity behavior post pandemic. A total of 58% of the respondents did not use technology to support physical activity during the pandemic. Of those who did use technology, wearables were most used (24%). Of those currently nonactive (25%) expressed a preference for an in-person format to conduct physical activity post pandemic. CONCLUSIONS: Physical activity performance, especially activities at moderate and high intensities, decreased during the pandemic in PwMS compared with prepandemic. Walking and using wearables gained popularity as ways to stay active. As we move toward an endemic COVID-19, a call for action to develop interventions focused on walking programs with specific emphasis on increasing physical activity of PwMS is proposed.

The impact of the COVID-19 pandemic on physical therapy practice for people with multiple sclerosis: A multicenter survey study of the RIMS network.

BACKGROUND: The impact of the COVID-19 pandemic on physical therapy services for people with multiple sclerosis (pwMS) is unknown. Therefore, the Special Interest Group for Mobility (SIG Mobility) of the European Network for Best Practice and Research in Multiple Sclerosis Rehabilitation (RIMS) has undertaken the initiative to examine the impact of the COVID-19 outbreak on physical therapy services and physical activity participation in pwMS across Europe, Israel and Australia. OBJECTIVE: To describe the impact of the COVID-19 outbreak on physical therapy practice from the perspective of the therapist. METHODS: An online survey was developed and conducted from December 2020 to July 2021. The survey (50 questions), included multiple-choice questions and open-ended responses. RESULTS: In total, 215 physical therapists (PT's) from 9 countries (Australia, Belgium, the Czech Republic, Ireland, Israel, Italy, Norway, Spain, and Turkey) participated in the study. The therapy most affected during the pandemic was aerobic training/conditioning exercises; 33.5% reported that these activities were either reduced or unavailable. In contrast, 15% of the PTs reported increased use of relaxation/mind body techniques and/or fatigue management programs during the pandemic. PTs reported a mixture of positive and negative feelings about the therapeutic sessions offered during the pandemic. Most reported positive feelings included "positive" (26.5%), and "optimistic" (24.7%). Negative feelings most frequently reported included "worried" (30.7%), and "hesitant" (20.9%). The PTs reported a 10% decrease in the use of hands-on techniques and a 10% increase in the use of oral instructions when treating moderately and severely pwMS during as compared to before the pandemic. CONCLUSION: The COVID-19 pandemic has affected physical therapy services in pwMS internationally in terms of content, frequency of use and format.

Performance of Activities of daily living in people with multiple sclerosis.

OBJECTIVE: Multiple sclerosis (MS) may result in activity and participation limitations, including the performance of activities of daily living (ADL). This study aims at systematically investigate ADL performance by using Assessment of Motor and Process Skills (AMPS) in people with MS (PwMS) of all disease types and within the Kurtzke Expanded Disability Status Scale (EDSS) range from 1.0 - 8.0. METHODS: Eight multiple sclerosis (MS) centres participated in data collection of a consecutive sample of PwMS. Participants were referred for assessment to occupational therapy (OT) by treating physician or recruited from neurology department in each hospital and assessed by EDSS and AMPS. The AMPS is an observational, criterion referenced ADL assessment, providing values for a person's ADL performance in terms of motor and process skills. Criterion referenced cut-off scores were established at 2.0 for motor skills and at 1.0 for process skills and both values above the cut-off score indicate competent (independent, safe, efficient and effortless) ADL performance. Process skills refer to the act of carrying out a series of actions and is summarized in terms of efficiency, like initiating without pauses, continuing actions through to completion, performing actions in logical order (sequences), choosing, and completing the task as planned (heeds). RESULTS: Two hundred and ten PwMS were recruited (48 +/- 13 years of age, 145 women/65 men, average disease duration was 11.8 +/- 9.6 years, average EDSS was 4.8+/-1.8). Average motor skills score was 1.01+/- 1.12 (indicating need for assistance with evidence of increased clumsiness/physical effort) and average process skills score was 1.02 +/- 0.66 (risk zone, questionable efficiency and more likely to need assistance). Overall, motor skills and process skills decreased with increasing EDSS score. No need for assistance in motor skills was indicated in subjects with lower EDSS scores (1.0 - 2.5). In higher EDSS group (≥4.5), 57% of subjects needed assistance in motor skills and 27% in process skills. The competency in process skills was either questionable or reduced within all EDSS scores. However, 33-38% of subjects with higher EDSS scores (6.0-8.5) showed competent performance in process skills. Overall correlation between motor and process scores was moderate (r = 0.56, p<0.0001), but no significant relationships between motor and process skills were found in the lower EDSS (1-2.5) and high EDSS scores (8-8.5). Further, EDSS and disease type were significant predictors, explaining 52.7% of motor skills and 22.3% of process skills performance. CONCLUSION: Problems in ADL performance were found in EDSS categories 1.0 to 8.0 and in all disease types, therefore it is advisable to screen all PwMS for ADL deficits and provide relevant rehabilitation interventions.

Motor sequence learning in a goal-directed stepping task in persons with multiple sclerosis: a pilot study.

Motor sequence learning in persons with multiple sclerosis (pwMS) and healthy controls (HC) under implicit or explicit learning conditions has not yet been investigated in a stepping task. Given the prevalent cognitive and mobility impairments in pwMS, this is important in order to understand motor learning processes and optimize rehabilitation strategies. Nineteen pwMS (the Expanded Disability Status Scale = 3.4 ± 1.2) and 18 HC performed a modified serial reaction time task by stepping as fast as possible on a stepping tile when it lit up, either with (explicit) or without (implicit) knowledge of the presence of a sequence beforehand. Motor sequence learning was studied by examining response time changes and differences between sequence and random blocks during the learning session (acquisition), 24 h later (retention), and in three dual-task (DT) conditions at baseline and retention (automaticity) using subtracting sevens, verbal fluency, and vigilance as concurrent cognitive DTs. Response times improved and were lower for the sequenced compared with the random blocks at the post- and retention tests (P's < 0.001). Response times during DT conditions improved after learning, but DT cost improved only for the subtracting sevens DT condition. No differences in learning were observed between learning conditions or groups. This study showed motor sequence learning, by acquisition and retention, in a stepping task in pwMS with motor impairments, to a similar degree as HC and regardless of learning conditions. Whether automaticity increased remains unclear.

Evolution and prediction of mismatch between observed and perceived upper limb function after stroke: a prospective, longitudinal, observational cohort study.

BACKGROUND: A previously shown 'mismatch' group of patients with good observed upper limb (UL) motor function but low perceived UL activity at six months post stroke tends to use the affected UL less in daily life than would be expected based on clinical tests, and this mismatch may also be present at 12 months. We aimed to confirm this group in another cohort, to investigate the evolution of this group from six to 12 months, and to determine factors on admission to inpatient rehabilitation and at 6 months that can discriminate between mismatch and good match groups at 12 months. METHODS: Persons after stroke were recruited on rehabilitation admission and re-assessed at six and 12 months. Observed UL function was measured with the upper extremity subscale of the Fugl-Meyer Assessment (FMA-UE) and perceived UL activity by the hand subscale of the Stroke Impact Scale 3.0 (SIS-Hand). We defined mismatch as good observed UL function (FMA-UE > 50/66) but low perceived activity (SIS-Hand≤75/100). Potential discriminators at admission and 6 months (demographic characteristics, stroke characteristics, UL somatosensory function, cognitive deficits, mental function and activity) were statistically compared for match and mismatch groups at 12 months. RESULTS: We included 60 participants (female: 42%) with mean (SD) age of 65 (12) years. We confirmed a mismatch group of 11 (18%) patients at 6 months, which increased to 14 (23%) patients at 12 months. In the mismatch group compared to the good match group at 12 months, patients had a higher stroke severity and more somatosensory impairments on admission and at 6 months. CONCLUSIONS: We confirmed a group of patients with good observed UL function but low perceived activity both at six and at 12 months post stroke. Assessment of stroke severity and somatosensory impairments on admission into rehabilitation could determine mismatch at 12 months and might warrant intervention. However, large differences in clinical outcomes between patients in the mismatch group indicate the importance of tailoring training to the individual needs.

Training for Caregivers and Compliance with Dysphagia Recommendations in a Tertiary Multiple Sclerosis Rehabilitation Center.

BACKGROUND: Dysphagia is common in persons with multiple sclerosis (MS). Speech and language therapists give dysphagia recommendations to persons with MS and caregivers. Nonadherence to these recommendations can increase the risk of aspiration. We investigated current compliance with dysphagia recommendations among caregivers and kitchen staff and assessed improvement in compliance by increasing knowledge through tailored training. METHODS: An observational cohort study was conducted over 4 weeks during which the compliance of the caregivers and kitchen staff in a rehabilitation center was monitored. A questionnaire was used to assess reasons for noncompliance. A 2-hour training session was provided for all caregivers and kitchen staff to improve their knowledge and skills. The compliance rate was observed again 1 and 6 months after the training. Compliance was defined by whether recommendations were followed. RESULTS: Results showed a significant improvement after training for overall compliance by caregivers (from 58% to >81%, P < .001). This improvement was still observed 6 months later (80%). After training, significant differences were found in compliance with the following recommendations (P ≤ .001): consistency of soup, consistency of liquids, food preparation, alertness, speed, amount, posture, and supervision. Recommendation for utensils did not improve (P = .44). Compliance with diet modifications made by the kitchen staff improved significantly (from 74% to >86%, P = .002), and even more during follow-up (to >95%, P = .009). CONCLUSIONS: Dysphagia training tailored to the needs of caregivers to improve knowledge significantly improves compliance with dysphagia recommendations and the quality of care.

An exploratory study of discrepancies between objective and subjective measurement of the physical activity level in female patients with chronic fatigue syndrome.

OBJECTIVE: To explore the ability of a self-report activity diary to measure the physical activity level (PAL) in female patients with chronic fatigue syndrome (CFS) and whether illness-related complaints, health-related quality of life domains (HRQOL) or demographic factors are associated with discrepancies between self-reported and objectively measured PAL. METHODS: Sixty-six patients with CFS, recruited from the chronic fatigue clinic of a university hospital, and twenty matched healthy controls wore an accelerometer (Actical) for six consecutive days and registered their activities in an activity diary in the same period. Participants' demographic data was collected and all subjects completed the CFS Symptom List (illness-related complaints) daily and Short-Form-36 (HRQOL domains) during the first and second appointment. RESULTS: A significant, but weak association between the activity diary and Actical was present in patients with CFS (rs = 0.376 and rs = 0.352; p < 0.001) and a moderately strong association in healthy controls (rs = 0.605; and rs = 0.644; p < 0.001) between week and weekend days, respectively. A linear mixed model identified a negative association between age and the discrepancy between the self-reported and objective measure of PA in both patients with CFS and healthy controls. CONCLUSION: The activity diary showed limited ability to register the PAL in female patients with CFS. The discrepancy between measures was not explained by illness-related complaints, HRQOL domains or demographic factors. The activity diary cannot replace objective activity monitoring measured with an accelerometer, but may provide additional information about the perceived activity.

Assessing life balance of European people with multiple sclerosis: A multicenter clinimetric study within the RIMS network.

BACKGROUND: Life balance is defined as "a satisfying pattern of daily activity that is healthful, meaningful, and sustainable to an individual within the context of his or her current life circumstances". To assess life balance, the self-report instrument Life Balance Inventory (LBI) has been developed in the US. The aim of this study was to evaluate cross-cultural, construct validity and test-retest reliability of translated versions of the LBI in people with multiple sclerosis (MS) within different European cultures (Dutch, Flemish, Slovenian, and Spanish). METHOD: The LBI was translated according to the principles of forward/backward translation and the cultural adaption process of patient-reported outcomes and evaluated in people with MS in each country/language area. LBI (score range 1-3; higher scores refer to better balance) was registered twice with an interval of 7 days to evaluate test-retest reliability using Intraclass Correlation Coefficients (ICCs) and Bland Altman analyses. To evaluate construct validity, Pearson correlations of the LBI with quality of life, fatigue, depression and self-efficacy were explored. RESULTS: The total sample (n = 313, 50 ± 11 years of age, MS duration 13 ± 8 years) consisted of five subsamples: Dutch (n = 81, 74% women, 54 ± 9.6 years of age), Flemish 1 (n = 42, 57% women, 49 ± 12 years), Flemish 2 (n = 105, 63% women, 50 ± 10.6 years), Slovenian (n = 48, 79% women, 44 ± 11.2 years) and Spanish (n = 37, 62% women, 47 ± 9.0 years). Baseline total LBI scores differed between subsamples (F(4, 312)=7.19, p < 0.001). ICC [95% CI] of total LBI was 0.88 [0.83-0.92] (Flemish 2), 0.65 [0.39-0.82] (Flemish 1), 0.55 [0.37-0.69] (Dutch), 0.45 [0.15-0.67] (Spanish) and 0.35 [0.07-0.59] (Slovenian). Systematic error was present in one sample; no proportional bias occurred. Correlations ranged from 0.05 to 0.55 for quality of life and self-efficacy, from -0.50 to 0.05 for fatigue and from -0.44 to -0.28 for depression, not fully supporting the hypotheses. CONCLUSION: The study results provide limited support for test-retest reliability, cross-cultural and construct validity of the LBI in different European subsamples. Although LBI may serve as a supportive tool in goalsetting in rehabilitation, the current version of LBI is not recommended for (international) research purposes.

Role of Rehabilitation in Promoting Engagement in Daily Life in Multiple Sclerosis: Facing the Challenges of the 21st Century.

The purpose of this narrative review is to define the theoretical constructs of engagement, participation, and balance. The implementation of these constructs in multiple sclerosis (MS) rehabilitation are described because MS symptoms such as fatigue and cognitive decline may affect engagement in daily life. The constructs of engagement and participation can be considered to be different when they are studied. The constructs related to balance are of interest when targeting engagement. Multidisciplinary rehabilitation programs may have beneficial effects in optimizing engagement. Therefore, the measurement of these constructs is primordial because they give us a deeper understanding of the meaning of activity performance that reflects engagement in daily life. Future research may focus on describing engagement in both men and women at all stages of MS and may explore variables that influence engagement in daily life to integrate engagement optimization in MS rehabilitation. Engagement may have beneficial effects as part of multidisciplinary rehabilitation in MS.

Psychometric properties of the Flemish version of the life balance inventory: a patient-reported outcome measure in the chronic stage after stroke.

Purpose: To investigate test-retest reliability, measurement error, and convergent validity of the Flemish version of the Life Balance Inventory (Fl-LBI) in chronic community-dwelling stroke survivors.Methods: Stroke survivors living at home (>6 months post-stroke) were recruited. The Fl-LBI was administered twice (1st home-visit, 2nd postal), with a 1-week time interval.Results: Thirty-two stroke-survivors participated: median age 61 years (IQR: 54-67), median time since stroke 571 days (IQR: 433-734). Median total Fl-LBI score was 2.47(IQR: 2.18-2.80) out of 3 on the first occasion (n = 32) and 2.55(IQR: 2.35-2.77) on the second occasion (n = 29), 91% retention rate. The intraclass correlation coefficient [95% confidence interval] for total Fl-LBI score was 0.88 [0.77-0.94] and for subscale scores >0.74 [0.48-0.94] indicating moderate to good test-retest reliability. Standard error of measurement was 0.14 out of 3(7%) and minimal detectable difference 0.39(20%). Agreement for activity category scores ranged from moderate to excellent. Construct validity was supported by moderate associations between Fl-LBI and participation (rs = 0.46); mobility (rs = 0.36) and emotion (rs = 0.37) subscales of the Stroke Impact Scale.Conclusion: In a pilot sample, the FL-LBI has satisfactory test-retest reliability, acceptable measurement error and minimal detectable difference and acceptable convergent validity. It can be used in clinical practice and research to assess life balance in chronic community-dwelling stroke survivors.Implications for rehabilitationLife balance can be a useful concept in stroke rehabilitation; it corresponds to individuals' perception of having a satisfying activity pattern tailored to their life circumstances.The Flemish version of the Life Balance Inventory can be used to evaluate life balance in community-dwelling chronic stroke.Satisfactory test-retest reliability and acceptable measurement error and minimal detectable difference were demonstrated in a pilot sample for the Flemish version of the Life Balance Inventory.

The Adult Assisting Hand Assessment Stroke: Psychometric Properties of an Observation-Based Bimanual Upper Limb Performance Measurement.

OBJECTIVE: To investigate interrater and intrarater reliability, measurement error, and convergent and discriminative validity of the Adult Assisting Hand Assessment Stroke (Ad-AHA Stroke). DESIGN: Cross-sectional observational study. SETTING: A total of 7 stroke rehabilitation centers. PARTICIPANTS: Stroke survivors (reliability sample: n=30; validity sample: N=118) were included (median age 67y; interquartile range [IQR], 59-76); median time poststroke 81 days (IQR 57-117). INTERVENTIONS: N/A. MAIN OUTCOME MEASURES: Ad-AHA Stroke, Action Research Arm Test (ARAT), upper extremity Fugl-Meyer Assessment (UE-FMA). The Ad-AHA Stroke is an observation-based instrument assessing the effectiveness of the spontaneous use of the affected hand when performing bimanual activities in adults poststroke. Reliability of Ad-AHA Stroke was examined using intraclass correlation coefficients (ICCs), Bland-Altman plots, and weighted kappa statistics for reliability on item level. SEM was calculated based on Ad-AHA units. Convergent validity was assessed by calculating Spearman rank correlation coefficients between Ad-AHA Stroke and ARA test and UE-FMA. Comparison of Ad-AHA Stroke scores between subgroups of patients according to hand dominance, neglect, and age evaluated discriminative validity. RESULTS: Intrarater and interrater agreement showed an ICC of 0.99 (95% confidence interval, 0.99-0.99), an SEM of 2.15 and 1.64 out of 100, respectively, and weighted kappa for item scores were all above 0.79. The relation between Ad-AHA and other clinical assessments was strong (ρ=0.9). Patients with neglect had significantly lower Ad-AHA scores compared to patients without neglect (P=.004). CONCLUSIONS: The Ad-AHA Stroke captures actual bimanual performance. Therefore, it provides an additional aspect of upper limb assessment with good to excellent reliability and low SEM for patients with subacute stroke. High convergent validity with the ARA test and UE-FMA and discriminative validity were supported.