Development of Fewer Falls in MS-An Online, Theory-Based, Fall Prevention Self-Management Programme for People With Multiple Sclerosis.

OBJECTIVE: The aim of this study was to describe the process used to develop a theory-based, online fall prevention self-management programme for ambulatory and non-ambulatory people with multiple sclerosis (pwMS). METHODS: The development process was guided by the Medical Research Council framework of complex interventions and began with a scoping review of the literature on self-management of falls in pwMS. Subsequent phases of development were performed through iterative and concurrent processes and were informed by the perspectives of pwMS and healthcare professionals with MS expertise. RESULTS: Through a systematic and iterative process in close collaboration with pwMS and healthcare professionals, a theory-based online fall prevention self-management programme, Fewer Falls in MS, for ambulatory and non-ambulatory pwMS was developed. The programme is grounded in theory and pedagogical models and features utilization of action plans to address diverse influences on fall risks. CONCLUSIONS: A carefully operationalized definition of self-management and an iterative co-development process were essential to the creation of the Fewer falls in MS programme. Continuation of the co-development process and collaboration with end users was needed to refine the programme. PATIENT OR PUBLIC CONTRIBUTION: PwMS and healthcare professionals were involved throughout the development process of the programme. The patient organization Neuro Sweden was contacted in the initial phase to discuss the relevance of a self-management programme to prevent falls in MS. They supported the research group (all authors) in identification of and contact with pwMS with interest to participate. Three members of the research group (S.T.J., M.F. and C.Y.), that is, the operative group, met neuro Sweden and one pwMS to further discuss the relevance of a self-management programme to prevent falls. To develop the process and content of the fall prevention programme, a co-design process was performed together with pwMS and healthcare professionals. The results of the co-design process are presented in this manuscript. In addition to participating in the co-design process, pwMS and healthcare professionals provided feedback to the research group on programme process and content on several occasions during the subsequent programme development process. In a pretest (Beta version) of the programme, four pwMS acted as test subjects and provided additional feedback on the programme to the research group. TRIAL REGISTRATION: NCT04317716.

Mobile health to promote physical activity in people post stroke or transient ischemic attack - study protocol for a feasibility randomised controlled trial.

BACKGROUND: Physical activity is essential to improve health and reduce the risk of recurrence of stroke or transient ischemic attack (TIA). Still, people post stroke or TIA are often physically inactive and the availability of physical activity promotion services are often limited. This study builds on an existing Australian telehealth-delivered programme (i-REBOUND- Let's get moving) which provides support for home-based physical activity for people post stroke or TIA. The aim of this study is to test the feasibility, acceptability, and preliminary effects of a mobile Health (mHealth) version of the i-REBOUND programme for the promotion of physical activity in people post stroke or TIA living in Sweden. METHODS: One hundred and twenty participants with stroke or TIA will be recruited via advertisement. A parallel-group feasibility randomised controlled trial design with a 1:1 allocation ratio to 1) i-REBOUND programme receiving physical exercise and support for sustained engagement in physical activity through behavioural change techniques, or 2) behavioural change techniques for physical activity. Both interventions will proceed for six months and be delivered digitally through a mobile app. The feasibility outcomes (i.e., reach, adherence, safety and fidelity) will be monitored throughout the study. Acceptability will be assessed using the Telehealth Usability Questionnaire and further explored through qualitative interviews with a subset of both study participants and the physiotherapists delivering the intervention. Clinical outcomes on preliminary effects of the intervention will include blood pressure, engagement in physical activity, self-perceived exercise self-efficacy, fatigue, depression, anxiety, stress and health-related quality of life and will be measured at baseline and at 3, 6 and 12 months after the baseline assessments. DISCUSSION: We hypothesise that the mHealth delivery of the i-REBOUND programme will be feasible and acceptable in people post stroke/TIA living in rural and urban regions of Sweden. The results of this feasibility trial will inform the development of full-scale and appropriately powered trial to test the effects and costs of mHealth delivered physical activity for people after stroke or TIA. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05111951. Registered November 8, 2021.

Muscle Strength and Power in People With Parkinson Disease: A Systematic Review and Meta-analysis.

BACKGROUND AND PURPOSE: No studies have synthesized the literature regarding mechanical muscle function (ie, strength, power, rate of force development [RFD]) in people with Parkinson disease (PD). Here, we aimed to expand our understanding of mechanical muscle function in people with PD (PwPD) by systematically reviewing (1) the psychometric properties of isokinetic/isometric dynamometry in PD, (2) the literature comparing mechanical muscle function in PwPD with healthy controls (HC), and (3) reported associations between muscle mechanical muscle function and functional capacity and/or disease severity. METHODS: Systematic literature search in 6 databases. Included studies had to (1) enroll and report data on PwPD, (2) include assessment(s) of psychometric properties (ie, validity, reliability, responsiveness) of isokinetic/isometric dynamometry in PD, and/or (3) assess mechanical muscle function in both PwPD and HC using isokinetic/isometric dynamometry. RESULTS: A total of 40 studies were included. Aim 1 studies (n = 2) showed high reliability for isometric dynamometry (hip-abductor/dorsiflexor/trunk flexor-extensor/handgrip: intraclass correlations coefficients range = 0.92-0.98). Aim 2 studies (n = 40) showed impaired mechanical muscle function (ie, strength, power, RFD) in PwPD compared with HC (effect sizes range = 0.52-1.89). Aim 3 studies (n = 11) showed weak-to-strong associations between overall and lower extremities muscle strength and functional capacity and/or disease severity outcomes (ie, Unified Parkinson Disease Rating Scale). DISCUSSION AND CONCLUSIONS: Sparse methodological evidence suggests high reliability when using dynamometry in PwPD. Muscle strength, power, and RFD are impaired in PwPD compared with HC. Muscle strength is associated with functional capacity and disease severity.Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A403 ).

Self-management of falls in people with multiple sclerosis: A scoping review.

OBJECTIVE: Falls are common in people with multiple sclerosis. There is rising interest in how the multifactorial and chronic nature of fall risk among people with multiple sclerosis can be addressed through self-management. Thus, the aims were to investigate the extent and the scope of publications on self-management of falls in people with multiple sclerosis, and to identify how the concept of self-management was defined and used. DATA SOURCES: A systematic literature search in Medline, Cochrane, Web of Science and PsycInfo was conducted to identify publications until July 2022. REVIEW METHODS: Published methodological guidance was followed. Articles targeting: (1) people with multiple sclerosis, (2) falls, and (3) self-management were selected. Of 1656 records, 203 publications were assessed for eligibility, of which 173 did not meet the inclusion criteria, and 16 publications did not contain empirical data. The type of publication, study focus, and study design was extracted. If applicable, key findings, self-management tasks and skills, and the definition of self-management were extracted. RESULTS: Fourteen original articles met all inclusion criteria. Ten articles represented six different fall prevention interventions. Three publications were randomized controlled trials. Self-management content was variable and not comprehensive in nature. None of the 14 publications included a self-management definition. CONCLUSION: The limited number of original articles and the even fewer intervention studies show that the research on self-management of falls in people with multiple sclerosis is in its infancy. To progress in the research area of self-management of falls, a more robust, consensus-based description of self-management frameworks and activities is needed.

Participation in social/lifestyle activities in people with multiple sclerosis: Changes across 10 years and predictors of sustained participation.

BACKGROUND: Identification of people with multiple sclerosis (PwMS) with increased risk of restricted participation in social and lifestyle activities (e.g. social outings and pursuing a hobby) could guide the development of interventions supporting sustained participation. OBJECTIVE: To explore changes in participation in complex and social everyday activities over 10 years in PwMS in relation to multiple sclerosis (MS) severity and to identify predictors of sustained participation. METHODS: This study was based on a 10-year follow-up of 264 PwMS living in Stockholm County, Sweden. Ten-year changes in participation in social/lifestyle activities were assessed and compared between PwMS with different MS severity with the Frenchay Activities Index using age- and sex-related normative values. Multiple logistic regression analyses were used to predict sustained participation at 10 years using personal factors, disease severity and functioning as independent variables. RESULTS: While a majority of people with mild MS demonstrated sustained participation (67%), a minority of PwMS moderately (26%) and severely affected by MS (5%) demonstrated sustained participation. Significant predictors of sustained participation after 10 years were walking speed ⩾1.2 m/s and ⩾32 correct responses on the Symbol Digit Modalities Test. CONCLUSION: Our findings accentuate the importance for health services to support mobility and cognition to obtain sustained participation.

Predictors for Employment Status in People With Multiple Sclerosis: A 10-Year Longitudinal Observational Study.

OBJECTIVE: To identify predictors for employment status after 10 years in a cohort of people with multiple sclerosis (MS), with the aim to increase knowledge concerning factors present at an early stage that are important for working life and work-life balance. DESIGN: A 10-year longitudinal observational cohort study. SETTING: University hospital. PARTICIPANTS: A consecutive sample of people with MS (N=154) of working age were included at baseline, of which a total of 116 people participated in the 10-year follow-up; 27 people declined participation and 11 were deceased. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Baseline data on personal factors and functioning were used as independent variables. Employment status 10 years after baseline, categorized as full-time work, part-time work, and no work, was used as the dependent variable. A generalized ordinal logistic regression was used to analyze the predictive value of the independent variables. RESULTS: Predictors for full- or part-time work after 10 years were young age (P=.002), low perceived physical impact of MS (P=.02), fatigue (P=.03), full-time work (P=.001), and high frequency of social/lifestyle activities (P=.001) at baseline. Low perceived physical impact of MS (P=.02) at baseline also predicted full-time work after 10 years. CONCLUSIONS: This study underlines the complexity of working life for people with MS, and indicates that it may be valuable to give more attention to the balance between working and private life, both in clinical practice and future research, to achieve a sustainable working life over time.

Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study.

AIMS AND OBJECTIVES: This study set out to describe caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers' health-related quality of life and life satisfaction. BACKGROUND: Knowledge about factors related to caregivers' health-related quality of life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. DESIGN: A cross-sectional study. METHODS: Forty-nine informal caregivers and 49 patients were included. Standardised and study-specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health-related quality of life (EuroQol Visual Analogue Scale, SF-36), life satisfaction (Life Satisfaction Checklist) and caregiver- and patient-related factors. Associations were explored by regression analyses. RESULTS: Both positive and negative caregiver experience were reported, and health-related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health-related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers' health-related quality and life satisfaction. CONCLUSION: The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person-centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers' health-related quality of life and life satisfaction. RELEVANCE TO CLINICAL PRACTICE: Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers' health.

Variations in and predictors of the occurrence of depressive symptoms and mood symptoms in multiple sclerosis: a longitudinal two-year study.

BACKGROUND: There is limited knowledge regarding how depressive symptoms and a cluster of specific mood symptoms in people with multiple sclerosis (MS) vary over time and how they are influenced by contributing factors. Therefore, the aims of this study were a) to describe variations over 2 years in the occurrence of depressive symptoms and mood symptoms in a sample of people with MS, and b) to investigate the predictive value of sex, age, coping capacity, work status, disease severity, disease course, fatigue, cognition, frequency of social/lifestyle activities, and perceived impact of MS on health, on the occurrence of depressive symptoms and mood symptoms. METHODS: Through using a protocol of measures of functioning and perceived impact of MS on health, comprising of the Beck Depression Inventory, 219 people with MS were assessed at 0, 12 and 24 months. Predictive values were explored with Generalised Estimating Equations. RESULTS: Proportions with depressive symptoms varied significantly (p < 0.001) from 21 to 30% between the three time points. Proportions with mood symptoms varied significantly (p < 0.001) from 14 to 17% between the three time points. Weak coping capacity and reduced frequency of social/lifestyle activities predicted the occurrence of depressive symptoms and mood symptoms, as did the psychological impact of MS on health in interaction with time. For people with MS of working age, not working predicted the occurrence of depressive symptoms and mood symptoms, as did the physical impact of MS on health on the occurrence of mood symptoms. CONCLUSIONS: The occurrence of depressive symptoms and mood symptoms in people with MS vary over a 2-year time period; almost half have depressive symptoms at least once. Health care services should develop strategies aimed at identifying people with MS who are depressed or who develop depressive symptoms. Interventions for alleviating depressive symptoms should consider the individual's coping capacity and perceived impact of MS on health, and facilitate their ability to maintain participation in valued everyday activities.

A 10-year population-based study of people with multiple sclerosis in Stockholm, Sweden: use of and satisfaction with care and the value of different factors in predicting use of care.

BACKGROUND: The national strategy for treatment of chronic diseases - including MS - and changes in the Swedish welfare system, call for analyses of the use of, and patient satisfaction with, care in a long-term perspective. The aim was therefore to explore the use of care and the predictive value of personal factors, disease-specific factors and functioning on the use of care and to explore patient satisfaction with care in a 10-year perspective. METHODS: Information regarding personal factors, disease-specific factors, functioning and satisfaction with care was collected by home-visits; use of care was collected from the Stockholm County Council computerised register. RESULT: Data from 121 people with MS (PwMS) was collected. Primary care accounted for the majority of all care. Neurology and Rehabilitation Departments together accounted for two-thirds of all hospital outpatient care. Rehabilitation Departments accounted for one-third of the total number of inpatient days. Lower coping capacity, impaired manual dexterity and activity of daily living dependency at baseline, together with progress in MS disability predicted a higher use of care. Overall, patient satisfaction with care was stable over time. CONCLUSION: The extensive use of care offers challenges to care coordination. Implementation of person-centred care could be a strategy to increase efficacy/outcome of care.

Can the Fatigue Severity Scale 7-item version be used across different patient populations as a generic fatigue measure--a comparative study using a Rasch model approach.

BACKGROUND: Fatigue is a disabling symptom associated with reduced quality of life in various populations living with chronic illnesses. The transfer of knowledge about fatigue from one group to another is crucial in both research and healthcare. Outcomes should be validly and reliably comparable between groups and should not be unduly influenced by diagnostic variations. The present study evaluates whether the Fatigue Severity Scale 7-item version (FSS-7) demonstrates similar item hierarchy across people with multiple sclerosis, stroke or HIV/AIDS to ensure valid comparisons between groups, and provide further evidence of internal scale validity. METHODS: A secondary comparative analysis was performed using data from three different studies of three different chronic illnesses: multiple sclerosis, stroke and HIV/AIDS. Each of these studies had previously concluded that the FSS-7 has better psychometric properties than the original FSS for measuring fatigue interference. Data from 224 people with multiple sclerosis, 104 people with stroke and 316 people with HIV/AIDS were examined. Item response theory and a Rasch model were chosen to analyze the similarity of the FSS-7 item hierarchy across the three diagnostic groups RESULTS: Cross-sample differences were found for items #3, #5, #6 and #9 for two of the three samples, which raise questions about item validity across groups. However, disease-specific and disease-generic Rasch measures were similar across samples, indicating that individual fatigue interference measures in these three chronic illnesses might still be reliably comparable using the FSS-7. CONCLUSIONS: Some items performed differently between the three samples but did not bias person measures, thereby indicating that fatigue interference in these illnesses might still be reliably compared using FSS-7 scores. However, caution is warranted when comparing fatigue raw sum scores directly across diagnostic groups using the FSS-7. Further studies of the scale are needed in other types of chronic illnesses.

Neanderthals did speak, but FOXP2 doesn't prove it.

Ackermann et al. treat both genetic and paleoanthropological data too superficially to support their conclusions. The case of FOXP2 and Neanderthals is a prime example, which I will comment on in some detail; the issues are much more complex than they appear in Ackermann et al.

Physiotherapists' and occupational therapists' experiences with cross-sectoral coordination of rehabilitation for people with mild stroke - a qualitative interview study.

PURPOSE: To meet the needs of people with mild stroke, multidisciplinary, person-centred, cross-sectoral rehabilitation is internationally recommended. However, there seem to be gaps in the rehabilitation process. The aim of this study was to investigate how occupational therapists and physiotherapists experience working in cross-sectoral rehabilitation for people with mild stroke. MATERIALS AND METHODS: Data were generated through interviews with occupational therapists and physiotherapists working in four different Danish rehabilitation settings. Four group interviews and two individual interviews with a total of 19 participants were conducted. Ricoeur's theory of interpretation was used to interpret and discuss the data. RESULTS: Four themes were identified: the risk of overlooking symptoms: better safe than sorry; varying degrees of involvement of people with mild stroke; spontaneous involvement of relatives; and contextual challenges for coherence in the rehabilitation process. CONCLUSION: The therapists experienced challenges in coordinating rehabilitation across sectors due to the timing of the needs assessment and contextual challenges. They used a preventive strategy of sending a plan or referral for later re-assessment. The therapists involved people with mild stroke to varying degrees. They involved relatives spontaneously. For successful rehabilitation, ongoing assessment, recognition of collaboration factors and relative involvement are essential.

It is crucial to continuously evaluate needs and establish goals throughout the entirety of the rehabilitation process.Recognizing that the capacity and resources of people with mild strokes to collaborate with professionals are contextually, relationally, and individually determined is important.Involvement of relatives should be strengthened on many levels from the institutional level to the personal level.

Use of health services in people with multiple sclerosis with and without depressive symptoms: a two-year prospective study.

BACKGROUND: To organize tailored healthcare for people with multiple sclerosis (MS), knowledge about patterns in the use of healthcare among subgroups, such as those with depressive symptoms, is essential. Thus, the purpose of this study was to explore and compare the use of health services in people with MS and depressive symptoms, and without depressive symptoms over a period of 30 months. METHODS: Data on the use of health services by 71 people with MS and depressive symptoms, and 102 with no depressive symptoms were collected from a computerised register and by interview, then categorized with regard to disease severity (Expanded Disability Status Scale). RESULTS: People with EDSS mild and depressive symptoms used more outpatient and inpatient care compared to those with no depressive symptoms. Furthermore, they received more unsalaried informal care as well as intense rehabilitation periods. CONCLUSIONS: The issues underlying the differences in the use of healthcare need to be explored further, as well as the plausible implications for the organization of healthcare services for people with MS and depressive symptoms. Furthermore, the life situations of caregivers of people with MS and depressive symptoms should be considered, and appropriate interventions supplied in order to diminish caregiver burden.

Struggling to Keep Up and Have a Good Life: A Qualitative Study of Living With Impaired Balance Control Due to Multiple Sclerosis.

OBJECTIVE: We aimed to explore and describe the experiences of people with multiple sclerosis (MS) living with impaired balance control and how balance impairment can be managed in everyday life. METHODS: A qualitative design was used. Data were collected through semistructured interviews. Transcripts were analyzed using qualitative inductive content analysis. Sixteen participants (12 women) with MS and variation in level of balance control were interviewed. Age ranged between 35 and 64 years, and overall MS-disability ranged between 2.0 (mild) and 5.5 (moderate) according to the Expanded Disability Status Scale. RESULTS: Five main categories emerged: Balance is an automatic skill that now requires attention; contributors to balance impairment; burdens of balance impairment; management of balance impairment; and negotiation between capacity and ambition for continuing the good life. Body functions emphasized as central to keeping balance were somatosensory-motor functions, vision, and management of fatigue. Day-to-day variation in capacity and being in stimuli-rich environments were conditions highlighted as impacting balance. The main categories yielded the overarching theme of being restrained by impaired balance control and struggling to keep up. CONCLUSION: Participants with MS described balance impairment as balance no longer being an automatic skill and having an adverse impact on everyday life. A strong effort was shown to not let shortcomings control and determine quality of life. To manage limitations and restrictions and to move forward in the struggle to keep up a good life, an extensive toolbox of strategies aiming to minimize the impact of balance impairment was used to maintain quality of life. IMPACT: This study highlights the importance of person-centered health care in MS, with increased awareness of the individual perspective of how balance impairment is perceived. The person-centered focus increases both quality and efficiency in therapy since it involves the individual's thoughts of a life where participation in valued activities is less restricted.

Unwrapping the "black box" of balance training in people with multiple sclerosis - A descriptive systematic review of intervention components, progression, and intensity.

BACKGROUND: Delineating the specific components of the existing balance training interventions in people with multiple sclerosis (PwMS) may contribute to a framework for future design and reporting of such interventions. Thus, we aimed to systematically synthesize how balance training frequency, intensity, time, type, duration, and progression are reported in balance training interventions for PwMS. METHODS: A systematic literature search was conducted in Medline, Embase, Web of Science, and Cinahl. Search terms were MS, postural balance, walking, gait, and randomized/quasi-randomized controlled or clinical trials. Articles including ambulatory PwMS and interventions designed to challenge the balance control system were eligible. Two investigators screened, selected, and extracted data independently. Data on study characteristics such as design, population, and balance training content were extracted. Categorization of balance training based on balance control components was performed. RESULTS: We included 40 studies grouped under five balance training categories. Balance interventions were well described regarding frequency, session time, and duration, but only two interventions described training intensity, and no systematic, gradual progression approach was reported for balance training adaptation over time. However, the balance training interventions included many sensory and motor components of the balance control system. Still, little focus was on reactive motor strategies, vestibular sense, and cognitive dual-tasking. CONCLUSIONS: Existing balance training interventions in PwMS primarily consist of practicing sensory and motor strategies. Future balance training interventions are encouraged to systematically monitor individual advancements in balance training adaptations and to apply the progressive overload principle (i.e. continuous increase in balance exercise stimulus over time). Furthermore, we suggest that balance training in PwMS is performed with high intensity near an individual's balance capacity limits. Finally, individualized balance training is recommended to cover all relevant components of balance control using the proposed framework.

Cognitive-motor interference in people with mild to moderate multiple sclerosis, in comparison with healthy controls.

BACKGROUND: Reduced motor and cognitive dual-task capacity is found to be more common among people with multiple sclerosis (MS), than among healthy populations. However, studies in larger samples of MS conducted using a more stringent methodology, which includes comparisons to healthy controls, are needed. Thus, the primary aim of this study was to explore the effects on motor and cognitive dual-tasking in people with mild to moderate overall MS-disability, in comparison to healthy controls. A second aim was to explore the differences in dual-task performance on a cognitive task between two motor tasks in people with mild to moderate MS and healthy controls. METHODS: This case-control study evaluated dual-task performance of the motor tasks standing with eyes closed (hereafter standing) and walking and a cognitive task assessing selective executive functions (auditory-Stroop test). Fifty-five people with MS (mild MS, n = 28; moderate MS, n = 27), and 30 healthy controls participated. Standing and walking were assessed using wireless inertial measurement unit sensors (APDM). Standing (three 30 s trials) was measured using sway area and root mean square sway, while walking (2 min) was measured using speed, stride length, and step time. Auditory-Stroop was measured using accuracy and response time. During dual-task assessments, each subject was instructed to pay equal attention to both tasks. Statistical significance was considered if p < .05. RESULTS: Instanding no significant within-group differences in the standing measures were found between single-task and dual-task performance. However, dual-task performance differed significantly between all groups (moderate MS > mild MS > healthy controls), except between mild and moderate MS in sway area. Inwalking, all groups slowed down speed and shortened stride length during dual-task condition compared to single-task condition. Moderate MS performed significantly poorer than mild MS and healthy controls in dual-task walking, but mild MS did not differ from healthy controls. In thecognitivetask only mild MS increased significantly in auditory-Stroop response time during walking. In healthy controls, the performance of auditory-Stroop was not affected by dual-tasking. Moderate MS had significantly longer response time in dual-task auditory-Stroop compared to the other groups, but no differences were observed between mild MS and healthy controls. Only mild MS had significantly longer response time during walking than during standing. CONCLUSION: This study showed that cognitive-motor interference in people with MS is present also in the early phases of the disease. This was shown during dual-tasking with slower walking and a longer response time in the cognitive task compared to healthy controls. Moderate MS performed poorer in almost every aspect of the motor and cognitive assessments in dual-task condition, compared to mild MS and healthy controls. Furthermore, during standing, people with MS performed poorer in standing measures compared to healthy controls. Additionally, healthy controls showed no cognitive interference during motor tasks. The results suggest that standardized regular assessment of dual-tasking in MS care might increase the individual's knowledge of dual-task capacity and contribute to understanding of possible related consequences. However, feasible assessment equipment and specific motor-cognitive dual-task training interventions for people with MS need to be developed.

Online self-management fall prevention intervention for people with multiple sclerosis: a feasibility study protocol of a parallel group randomised trial.

INTRODUCTION: Falls among people with multiple sclerosis (PwMS) are common and associated with injuries, fear of falling and low health-related quality of life. Considerations of behavioural, environmental, psychological and physical influences (including ambulation status) are needed to meet fall prevention needs for PwMS. Thus, using a codesign process involving key stakeholders a novel online self-management fall prevention intervention was created specifically for ambulatory and non-ambulatory PwMS. The feasibility, acceptability, fidelity and outcome of this complex intervention will be explored. Findings will inform a future full-scale randomised controlled trial. METHODS AND ANALYSIS: A mixed-method design will be used. Forty-eight PwMS, stratified for ambulation level, will be randomised to control (n=24) or intervention (n=24). Both groups will receive a brochure about fall risk factors and fall prevention. The intervention is group-based (eight PwMS in each group); will be delivered online; and involve six, 2-hour weekly sessions and a booster session 8 weeks after the sixth session. Each intervention group will be led by a trained facilitator. Data collection will be performed at baseline, and after seven and 18 weeks. Outcome measures will capture data on fall prevention behaviours, fear of falling, falls self-efficacy, social and everyday activities, perceived impact of MS and number of falls. Feasibility of recruitment process, data collection procedures, outcome measures, and delivery, and intervention acceptability, fidelity and outcomes will be evaluated. Both quantitative and qualitative methods will be used. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Swedish Ethical Review Authority (registration number 2021-04817). Results will be disseminated in peer-review journals, at conferences, research meetings, in social media and through the patient organisation Neuro Sweden. TRIAL REGISTRATION NUMBER: NCT04317716.

Test-Retest Reliability of the Mini-BESTest in People With Mild to Moderate Multiple Sclerosis.

OBJECTIVE: The mini-Balance Evaluation Systems Test (BESTest) is a balance measure for assessment of the underlying physiological systems for balance control in adults. Evaluations of test-retest reliability of the mini-BESTest in larger samples of people with multiple sclerosis (MS) are lacking. The purpose of this study was to investigate test-retest reliability of the mini-BESTest total and section sum scores and individual items in people with mild to moderate overall MS disability. METHODS: This study used a test-retest design in a movement laboratory setting. Fifty-four people with mild to moderate overall MS disability according to the Expanded Disability Status Scale (EDSS) were included, with 28 in the mild subgroup (EDSS 2.0-3.5) and 26 in the moderate subgroup (EDSS 4.0-5.5). Test-retest reliability of the mini-BESTest was evaluated by repeated measurements taken 1 week apart. Reliability and measurement error were analyzed. RESULTS: Test-retest reliability for the total scores was considered good to excellent, with intraclass correlation coefficients of .88 for the whole sample, .83 for the mild MS subgroup, and .80 for the moderate MS subgroup. Measurement errors were small, with standard error of measurement and minimal detectable change of 1.3 and 3.5, respectively, in mild MS, and 1.7 and 4.7, respectively, in moderate MS. The limits of agreement were -3.4 and 4.6. Test-retest reliability for the section scores were fair to good or excellent; weighted kappa values ranged from .62 to .83. All items but 1 showed fair to good or excellent test-retest reliability, and percentage agreement ranged from 61% to 100%. CONCLUSION: The mini-BESTest demonstrated good to excellent test-retest reliability and small measurement errors and is recommended for use in people with mild to moderate MS. IMPACT: Knowledge of limits of agreement and minimal detectable change contribute to the interpretability of the mini-BESTest total score. The findings of this study enhance the clinical usefulness of the test for evaluation of balance control and for designing individually customized balance training with high precision and accuracy in people with MS.

Experiences of next of kin to patients with amyotrophic lateral sclerosis using invasive ventilation via tracheostomy.

OBJECTIVE: To investigate the experience of being the next of kin to patients with amyotrophic lateral sclerosis who use invasive ventilation via tracheostomy. METHODS: Semi-structured interviews with eight next of kin were conducted and analysed using qualitative content analysis. RESULTS: Three main themes comprising a total of nine subthemes emerged from the analysis: A turbulent care process aiming to extend life, Struggling to cope with the strains of everyday life, and Conflicting roles as next of kin and carer. CONCLUSION: The results highlight the importance of involving next of kin throughout the whole care process and considering their specific needs. Furthermore, the development of specific support interventions to facilitate the everyday life for next of kin and to ease their burden are much needed.IMPLICATIONS FOR REHABILITATIONIt is important to involve next of kin and consider their needs throughout the whole care process regarding invasive ventilation via tracheostomy.Specific support interventions need to be developed to facilitate the everyday life for next of kin and to ease their burden.

Activity limitations and participation restrictions in people with multiple sclerosis: a detailed 10-year perspective.

AIM: To conduct a detailed investigation into changes in activity limitations and participation restrictions over 10 years in people with mild, moderate and severe multiple sclerosis. METHODS: This study was a 10-year longitudinal study of 264 people with multiple sclerosis living in Stockholm County, Sweden. Ten-year changes in personal and instrumental activities in daily living were assessed using the Katz Activities in Daily Living Index Extended and participation in social/lifestyle activities using the Frenchay Activities Index. RESULTS: While people with moderate multiple sclerosis, compared to baseline, demonstrated significantly higher proportions of dependency in most activities of personal and instrumental activities in daily living at the 10-year follow-up, the mild group primarily increased their dependency in instrumental activities and the severe group in personal activities. Significantly higher proportions of the moderate group showed restricted participation in domestic and outdoor activities whereas the mild group only showed restrictions in a few domains of participation. A majority of people with severe multiple sclerosis showed restricted participation in all social/lifestyle activities at baseline and the 10-year follow-up. CONCLUSIONS: Prominent long-term increases in activity limitations and participation restrictions occurred across the spectrum of disease severity but was most pronounced in those more moderately affected. Implications for rehabilitation This study provides guidance with regard to specific activities that are prone to deteriorate across 10 years and thereby reflect important targets and outcomes for interventions. Increases in activity limitations and participation restrictions were most pronounced in those moderately affected by multiple sclerosis. Those mildly affected by multiple sclerosis primarily increased their dependency in instrumental activities of daily living while those severely affected increased their dependency in personal activities of daily living.