Trajectories of self-reported fatigue following initiation of multiple sclerosis disease-modifying therapy.

BACKGROUND: We analysed the COMparison Between All immunoTherapies for Multiple Sclerosis (NCT03193866), a Swedish nationwide observational study in relapsing-remitting multiple sclerosis (RRMS), to identify trajectories of fatigue and their association with physical disability following start of disease-modifying therapy (DMT). METHODS: Using a group-modelling approach, we assessed trajectories of fatigue with the Fatigue Scale for Motor and Cognitive Functions and physical disability with Expanded Disability Status Scale among 1587 and 1818 individuals who initiated a first DMT and had a first DMT switch, respectively, followed during 2011-2022. We investigated predictors of fatigue trajectories using group membership as a multinomial outcome and calculated conditional probabilities linking membership across the trajectories. RESULTS: We identified five trajectories of fatigue in participants who initiated their first DMT: no fatigue (mean starting values=23.7; 18.2% of population), low (35.5; 23.9%), mild (49.0; 21.6%), moderate (61.3; 20.1%) and severe (78.7; 16.1%). While no, low, mild and severe fatigue trajectories remained stable, the moderate trajectory increased to severe fatigue. Similarly, we identified six fatigue trajectories among participants who did a DMT switch, all indicating stable values over time. Women initiating a first DMT were more likely than men to display a severe fatigue trajectory, relative to the no fatigue one. There was a strong association between fatigue and physical disability trajectories. CONCLUSIONS: In this cohort of people with actively treated RRMS, self-reported fatigue remained stable or increased over the years following DMT start. There was a strong association between fatigue and disability after DMT start.

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.

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.

The Effects of Neck-Specific Training Versus Prescribed Physical Activity on Pain and Disability in Patients With Cervical Radiculopathy: A Randomized Controlled Trial.

OBJECTIVE: To compare the effects of a neck-specific training program to prescribed physical activity with both groups receiving a cognitive behavioral approach, on pain and disability in patients with cervical radiculopathy (CR). DESIGN: Parallel-group randomized clinical trial with follow-up at 3, 6, 12, and 24 months. SETTING: Recruitment and assessments of participants were performed at a university hospital. Interventions were performed in primary care setting at outpatient physiotherapy clinics. PARTICIPANTS: Patients (N=144) with CR were recruited to participate in this clinical trial. INTERVENTIONS: Patients were randomly assigned to 3 months of either of a neck-specific training program or prescribed physical activity. MAIN OUTCOME MEASURES: Primary outcomes included self-rated neck and arm pain as collected by the visual analog scale (VAS). Secondary outcomes were self-rated headache measured with the VAS, the Neck Disability Index, the EuroQol 5D, the Fear Avoidance Beliefs Questionnaire, and the Hospital Anxiety and Depression Scale. Assessments were performed at baseline and at 3-, 6-, 12-, and 24-month follow-up periods. RESULTS: Intention-to-treat and per-protocol analyses showed no significant interaction (group × time) or group effects. There were, however, significant time effects indicating improvement over time for both groups for all outcomes except for levels of depression. CONCLUSIONS: The study revealed that neck-specific training as well as prescribed physical activity both including additional cognitive behavioral approach decreased the pain in patients with CR, that is, participants improved regardless of the intervention received. There is a lack of consensus of how to best manage individuals with CR. However, our findings suggest that CR has a natural favorable long-term outcome when patients are prescribed neck-specific training and exercise in combination with a behavioral approach.

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.

Participation restriction in childhood phenotype of myotonic dystrophy type 1: a systematic retrospective chart review.

AIM: Myotonic dystrophy type 1 (DM1), a neuromuscular disorder, is divided into four clinical phenotypes: congenital; childhood; adult-onset, and late-onset. Publications about the childhood phenotype, especially the long-term outcome, are scarce. The aims of this study were to assess and describe participation outcomes in adults with the childhood phenotype. METHOD: A retrospective chart methodology. Data were extracted from health records for 63 adults with childhood DM1 (32 males, 31 females; mean age 34y, standard deviation [SD] 11y 6mo; range 18-54y) who had attended the Saguenay Neuromuscular Clinic, Canada. RESULTS: Thirty-four adults (54%) lived with their parents or in foster homes, and most patients needed services or help to live independently. A significant proportion (22%) were isolated in regard to friendship. Very few adults had children, although 33% lived with a spouse. The majority of patients (86%) relied on social security and only one person was currently working. Financial responsibilities were often an issue and 13 (21%) were under legal guardianship. INTERPRETATION: This study showed that patients with the childhood phenotype present a guarded prognosis regarding long-term social participation. These participation restrictions could be related to behavioural, cognitive, and social stigma problems in childhood. This study illustrates the absolute necessity to pursue an interdisciplinary follow-up of these patients when they are reaching adulthood.

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.

High Physical Exposure During Female Recruits' Basic Military Training in Sweden-A Descriptive Study.

INTRODUCTION: There is a knowledge gap concerning the occurrence of physical complaints/injuries, i.e., musculoskeletal disorders (MSD), among Swedish women who undergo basic military training (BMT). The aims were to describe prevalence and factors related to MSD and explore physical exposure and performance in Swedish female recruits during BMT. MATERIALS AND METHODS: A total of 144 females (mean age 22 years) who underwent BMT in 2016 participated in this cross-sectional study. Data regarding self-reported MSD, physical performance, physical activity and exercise, motivation and mental and physical preparation, and physical exposure during BMT and perceived health were collected at the end of BMT through the Musculoskeletal Screening Protocol questionnaire. Additional data on muscle strength were retrieved from IsoKai isokinetic lift tests. Descriptive and analytic (paired samples t-test and logistic binary regression) statistics were used. RESULTS: The prevalence of MSD was high, with 33% (n = 48) reporting MSD before BMT, 78% (n = 113) during, and 50% (n = 72) at the end of BMT. Knee and upper back were the most frequently reported MSD locations. Forty-four (30%) participants felt insufficiently physically prepared for BMT. The physical exposure was high with loaded marches/runs and carrying heavy loads as the most demanding tasks. The longest walking distance was reportedly 55 km, and the reported maximum load was 50 kg. Forty-five participants (31%) had carried a load representing over 50% of their body weight. Most participants reported good to excellent health at the end of BMT. There was a small (8 N) but significant (P = 0.045) increase in mean force over time. Two variables, MSD before BMT (odds ratio 2.24, P = 0.03) and being physically unprepared (odds ratio 3.03, P < 0.01), were associated with MSD at the end of BMT. CONCLUSION: This study showed that the prevalence of MSD in Swedish female recruits was high before, during, and at the end of BMT, with knee and upper back as the most frequent locations. Although the physical exposure during BMT was occasionally high, self-rated health was mainly perceived as good to excellent at the end of BMT. Previous MSD and being physically unprepared were related to MSD at the end of BMT. These important and relevant findings indicate the necessity for implementing interventions to increase physical fitness and treat MSD at the beginning of BMT.

Preventing falls in multiple sclerosis: a qualitative study on user requirements for a self-management programme.

PURPOSE: To explore perspectives of ambulatory and non-ambulatory people with MS (PwMS) and health care professionals (HCPs) on falls and falls management to gain a deeper understanding of how a self-management programme can be designed to fit the needs of end users. MATERIALS AND METHODS: Twelve PwMS and seven HCPs participated in three four-hour workshops based on Design Thinking. Collected data were field notes and digital post-it notes gathered at the workshops. Data were analyzed using qualitative content analysis with an inductive approach. RESULTS: Two main categories, "Managing the complexity of fall-risk behaviour" and "Embracing diversity to establish group engagement", comprising a total of seven categories were constructed from the analysis. The first main category reflects the challenges PwMS face in managing fall risk in their daily lives, and the support needed to address these challenges. The second main category highlights how engaging in peer learning activities can fulfil individual needs and improve learning outcomes for PwMS. CONCLUSION: A self-management fall prevention programme that is relevant to PwMS regardless of ambulation level should include the development of self-tailored behavioural strategies to prevent falls along with interactive learning activities with other PwMS.

A self-management fall prevention programme should be customized to individual fall prevention needs and circumstances in daily life.A self-management fall prevention programme conducted online can enable accessibility for ambulatory and non-ambulatory people with multiple sclerosis (PwMS).Peer learning in groups with other PwMS can facilitate the development of self-tailored fall prevention strategies and provide positive reinforcement to support behavioral change.

The effect of neck-specific exercise and prescribed physical activity on headache and dizziness in individuals with cervical radiculopathy: Further analyses of a randomized study with a 1-year follow-up.

OBJECTIVE: To evaluate the effect of neck-specific exercise (NSE) compared to prescribed physical activity (PPA) on headache and dizziness in individuals with cervical radiculopathy (CR). Also, to investigate associations between headache or dizziness and pain, neck muscle endurance (NME), neck mobility, physical activity, and fear avoidance beliefs. METHODS: Individuals randomized to either NSE or PPA were selected to a headache subgroup (n = 59) and/or a dizziness subgroup (n = 73). Data were evaluated, according to headache and/or dizziness outcomes at baseline and at 3, 6, and 12-month follow-ups. RESULTS: No significant between-group differences were found between NSE and PPA in either subgroup. In the headache subgroup, significant within-group improvements were seen at all follow-ups for NSE (p < .001) and from baseline to 3 (p = .037) and 12 (p = .003) months for PPA. For dizziness, significant within-group improvements were seen from baseline to 3 months for NSE (p = .021) and from baseline to 3 (p = .001) and 6 (p = .044) months for PPA. Multiple regression models showed significant associations at baseline between headache intensity and neck pain (adjusted R-square = 0.35, p < .001), and for dizziness with neck pain and dorsal NME (adjusted R-square = 0.34, p < .001). CONCLUSION: NSE and PPA show similar improvements in headache intensity and dizziness in individuals with CR. Headache intensity is associated with neck pain, and dizziness with neck pain and dorsal NME, highlighting the importance of these factors when evaluating headache and dizziness.

Predictors of patient-reported fatigue symptom severity in a nationwide multiple sclerosis cohort.

BACKGROUND: Fatigue is a debilitating symptom of multiple sclerosis (MS), but its relation to sociodemographic and disease-related characteristics has not been investigated in larger studies. The objectives of this study were to evaluate predictors of self-reported fatigue in a Swedish nationwide register-based MS cohort. METHODS: Using a repeated cross-sectional design, we included 2,165 persons with relapsing- remitting and secondary progressive MS with one or multiple Fatigue Scale for Motor and Cognitive Functions (FSMC) scores, which was modelled using multivariable linear regressions for multiple predictors. RESULTS: Only associations to expanded disability status scale (EDSS) and Symbol Digit Modalities Test (SDMT) were considered clinically meaningful among MS-associated characteristics in our main model; compared to mild disability (EDSS 0-2.5), those with severe disability (EDSS ≥6) scored 17.6 (95% CI 13.1-22.2) FSMC points higher, while the difference was 10.7 (95% CI 8.0-13.4) points for the highest and lowest quartiles of SDMT. Differences between highest and lowest quartiles of health-related quality of life (HRQoL) instruments were even greater and considered clinically meaningful; EuroQoL Visual Analogue Scale (EQ-VAS) 31.9 (95% CI 29.9-33.8), Multiple Sclerosis Impact Scale (MSIS-29) psychological component 35.6 (95% CI 33.8-37.4) and MSIS-29 physical component 45.5 (95% CI 43.7-47.4). CONCLUSION: Higher self-reported fatigue is associated with higher disability level and worse cognitive processing speed, while associations to other MS-associated characteristics including MS type, line of disease modifying therapy (DMT), MS duration, relapse and new cerebral lesions are weak. Furthermore, we found a strong correlation between high fatigue rating and lower ratings on health-related quality of life instruments.

The relationship between walking, manual dexterity, cognition and activity/participation in persons with multiple sclerosis.

BACKGROUND: Multiple sclerosis has a vast impact on health, but the relationship between walking, manual dexterity, cognition and activity/participation is unclear. OBJECTIVE: The specific aims were to explore the discriminative ability of measures of walking, manual dexterity and cognition, and to identify cut-off values in these measures, for prediction of independence in personal and instrumental activities of daily living (ADL) and activity/participation in social and lifestyle activities. METHODS: Data from 164 persons with multiple sclerosis were collected during home visits with the following measures: the 2 × 5 m walk test, the Nine-hole Peg Test, the Symbol Digit Modalities Test, the Katz Personal and Instrumental ADL Indexes, and the Frenchay Activities Index (measuring frequency in social and lifestyle activities). RESULTS: The 2 × 5 m walk test and the Nine-hole Peg Test had high and better discriminative and predictive ability than the Symbol Digit Modalities Test. Cut-off values were identified. The accuracy of predictions was increased above all by combining the 2 × 5 m walk test and the Nine-hole Peg Test. CONCLUSION: The proposed cut-off values in the 2 × 5 m walk test and the Nine-hole Peg Test may be used as indicators of functioning and to identify persons risking activity limitations and participation restrictions. However, further studies are needed to confirm the usefulness in clinical practice.

A Call to Use the Multicomponent Exercise Tai Chi to Improve Recovery From COVID-19 and Long COVID.

Approximately 10% of all COVID patients develop long COVID symptoms, which may persist from 1 month up to longer than 1 year. Long COVID may affect any organ/system and manifest in a broad range of symptoms such as shortness of breath, post-exercise malaise, cognitive decline, chronic fatigue, gastrointestinal disorders, musculoskeletal pain and deterioration of mental health. In this context, health institutions struggle with resources to keep up with the prolonged rehabilitation for the increasing number of individuals affected by long COVID. Tai Chi is a multicomponent rehabilitation approach comprising correct breathing technique, balance and neuromuscular training as well as stress- and emotional management. In addition, practicing Tai Chi elicits the relaxation response and balances the autonomic nervous system thus regulating respiration, heart rate, blood pressure and vitality in general. Moreover, Tai Chi has been shown to increase lung capacity, improve cognitive status and mental health, and thereby even the quality of life in diseases such as chronic obstructive pulmonary disease (COPD). Hence, we advocate Tai Chi as potent and suitable rehabilitation tool for post-COVID-19-affected individuals.

Test-Retest Reliability and Translation of the Musculoskeletal Screening Protocol Questionnaire Used in the Swedish Armed Forces.

INTRODUCTION: Musculoskeletal disorders (MSDs) in military personnel are common, and it is important to identify those at risk so that appropriate preventive and rehabilitative strategies can be undertaken. The Musculoskeletal Screening Protocol (MSP) questionnaire is part of the implemented prevention strategy to reduce MSDs in the Swedish Armed Forces. The aims of this study were to evaluate the questionnaire's reliability and to translate it into English. MATERIALS AND METHODS: One-week test-retest reliability of the questionnaire was evaluated in a sample of 35 Swedish military personnel. Reliability was evaluated by calculations of Cohen's kappa or quadratic-weighted kappa. Percent agreement was used as a parameter for measurement error. Translation into English included forward and backward translations and expert committee discussions. RESULTS: Kappa values relating to physical complaints/injuries were excellent (>0.75) except for knee and lower leg MSDs and for the intensity ratings, where Kappa values were mostly interpreted as fair-to-good (0.4-0.75). Kappa values of items pertaining physical performance, physical activity and exercise, eating and tobacco habits, sleep, and perceived health ranged between 0.72 and 1. Kappa values for feeling mentally or physical prepared were 0.47 and 0.65, respectively. Most percentage agreement values ranged between 90% and 100%. The English version was found to be satisfactorily equivalent to the Swedish MSP questionnaire. CONCLUSION: The Swedish MSP questionnaire was found to be highly reliable and was satisfactorily translated into English. This provides support for the questionnaire's ability to trustworthily capture the prevalence of MSDs and perceived health in military personnel. Future research is warranted on the psychometric properties of the English MSP questionnaire.

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.

Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study.

BACKGROUND: Patients with amyotrophic lateral sclerosis (ALS) need a large amount of healthcare services. Knowledge on use of and satisfaction with healthcare is, however, scarce. OBJECTIVE: The objectives were to explore use and satisfaction of healthcare in patients with ALS. METHODS: The sample consisted of patients with ALS, recruited from the ALS clinic at the Karolinska University Hospital, Stockholm, Sweden, participating in a three-year observational study. Data on healthcare utilisation were retrieved from the computerised register at Region Stockholm, Sweden. Information regarding disability, contextual factors and satisfaction with care was collected by home visits. RESULTS: Over time, half, or less of the patients used inpatient care, whereas all used outpatient care. Half of all outpatient contacts were with providers of advanced healthcare in the home and one-fifth with allied health professionals. Nurses performing home visits composed the largest proportion of outpatient contacts. A small amount of the utilised outpatient care emerged from the ALS clinic. Patients with severe disease and longer time since diagnosis had fewer contacts with the ALS clinic. Satisfaction with care was in general stable over time with around two-thirds or more of patients being satisfied. Most patients wanted to participate in care planning, but few had. CONCLUSION: Patients with ALS use hospital-based specialist care and other outpatient care in parallel with many healthcare providers involved. Our findings highlight the need for implementation of person-centred care to improve both coordination of care, care transitions and satisfaction with healthcare services.

Cross-cultural adaptation and inter-rater reliability of the Swedish version of the Chelsea critical care assessment tool (CPAX-Swe) in critically ill patients.

OBJECTIVES: To translate and culturally adapt the Chelsea Critical Care Physical Assessment Tool into Swedish and to test the inter-rater reliability of the Swedish version in critically ill patients. DESIGN: This is an observational study. METHODS: Translation and cross-cultural adaptation was performed in line with international recommendations, including forward and backward translation and expert round table discussions. The inter-rater reliability of the Chelsea Critical Care Physical Assessment Tool - Swedish was then explored in 50 critically ill adult patients, pragmatically recruited, in a University Hospital clinical setting. Reliability was calculated using intraclass correlation coefficient for aggregated scores and quadratic weighted Cohen's kappa analysis for individual items. RESULTS: The expert round table discussion group agreed that the translation was a satisfactory equivalent to the original version and applicable for use within the clinical setting. Reliability of aggregated scores and individual items were very good (intraclass correlation coefficient of 0.97 and quadric weighted kappa values ranging from 0.88 to 0.98). The measurement error for aggregated scores was low, with a standard error of measurement of 1.79, smallest detectable change of 4.95, and limits of agreement of 5.20 and -4.76. The percentage agreement for individual items ranged from 64% to 88%. CONCLUSION: The Chelsea Critical Care Physical Assessment Tool - Swedish was found applicable and appropriate for assessment of functioning in critically ill patients in an acute setting in Sweden, and it displayed high inter-rater reliability. This implies that the Swedish version can be used as assessment tool within intensive care and acute wards in Sweden.Implications for rehabilitationThere is a lack of validated instruments to test the functional status of critically ill patients in Sweden.The Chelsea Critical Care Physical Assessment Tool is validated and reliable in English.The Chelsea Critical Care Physical Assessment Tool - Swedish is considered reliable for use by physiotherapist in intensive care settings in Sweden.The Swedish version is feasible for use within clinical practice due to its simplicity and strong clinical relevance.

Differential effects on blood and cerebrospinal fluid immune protein markers and kynurenine pathway metabolites from aerobic physical exercise in healthy subjects.

Mounting evidence shows that physical exercise modulates systemic inflammation. However, its effect on cerebrospinal fluid (CSF) immune-marker profiles in man are largely unknown. We here report a study on healthy subjects (n = 27, males = 12, mean age 28.7, range 22-52) allocated to either an acute exercise setting over four consecutive days, or a training intervention over 4 weeks. Paired plasma and CSF samples collected at baseline, after 7 days of exercise abstention, and the day after completion of the exercise interventions, were analyzed for protein inflammation markers using a multiplex proximity extension assay and neurotransmitters and kynurenine pathway (KP) metabolites using liquid chromatography, respectively. Routine cell counts, and albumin, immunoglobulin G and neurofilament light chain concentrations in CSF remained unchanged in both paradigms, while several inflammatory proteins became upregulated after acute exercise. However, only changes in three CSF (vascular endothelial growth factor-A, interleukin-7 and matrix metalloproteinase-10) and 12 plasma proteins reached significance levels after adjustment for multiple comparisons and exclusion of less stable proteins. Similarly, KP metabolites only changed among participants after acute exercise, while neurotransmitter levels, except for increased CSF serine, remained stable. Both in plasma and CSF changes in KP metabolites and inflammatory proteins correlated, suggesting that these processes are functionally linked. These findings suggest that acute aerobic physical exercise affects immune markers and KP metabolites systemically and in the CSF.