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.

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.

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.

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.

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.

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.

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.

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 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.

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.

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.

Mechanisms of recovery after neck-specific or general exercises in patients with cervical radiculopathy.

BACKGROUND: The mechanisms of action that facilitate improved outcomes after conservative rehabilitation are unclear in individuals with cervical radiculopathy (CR). This study aims to determine the pathways of recovery of disability with different exercise programs in individuals with CR. METHODS: We analysed a dataset of 144 individuals with CR undergoing conservative rehabilitation. Eleven variables collected at baseline, 3, 6 and 12 months follow-up were used to build a Bayesian Network (BN) model: treatment group (neck-specific vs. general exercises), age, sex, self-efficacy, catastrophizing, kinesiophobia, anxiety, neck-arm pain intensity, headache pain intensity and disability. The model was used to quantify the contribution of different mediating pathways on the outcome of disability at 12th months. RESULTS: All modelled variables were conditionally independent from treatment groups. A one-point increase in anxiety at 3rd month was associated with a 2.45-point increase in 12th month disability (p <.001). A one-point increase in head pain at 3rd month was associated with a 0.08-point increase in 12th month disability (p <.001). Approximately 83% of the effect of anxiety on disability was attributable to self-efficacy. Approximately 88% of the effect of head pain on disability was attributable to neck-arm pain. CONCLUSIONS: No psychological or pain-related variables mediated the different treatment programs with respect to the outcome of disability. Thus, the specific characteristics investigated in this study did not explain the differences in mechanisms of effect between neck-specific training and prescribed physical activity. The present study provides candidate modifiable mediators that could be the target of future intervention trials. SIGNIFICANCE: Psychological and pain characteristics did not differentially explain the mechanism of effect that two exercise regimes had on disability in individuals with cervical radiculopathy. In addition, we found that improvements in self-efficacy was approximately five times more important than that of neck-arm pain intensity in mediating the anxiety-disability relationship. A mechanistic understanding of recovery provides candidate modifiable mediators that could be the target of future intervention trials. TRIALS REGISTRATION: ClinicalTrials.gov identifier: NCT01547611.

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.

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.

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.

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.

What Biopsychosocial Factors are Associated With Work Ability in Conservatively Managed Patients with Cervical Radiculopathy? A Cross-Sectional Analysis.

BACKGROUND: No previous studies have investigated what biopsychosocial factors are associated with self-reported work ability in conservatively managed patients with cervical radiculopathy. OBJECTIVE: To develop a theoretical model of factors and potential processes associated with variation in work ability based on a thorough assessment of biopsychosocial variables in conservatively managed patients with cervical radiculopathy. DESIGN: Cross-sectional observational study. SETTING: Tertiary neurosurgery clinic. PATIENTS: A total of 144 conservatively managed patients with cervical pain and radiculopathy participated in the study. METHODS: From 64 biopsychosocial candidate variables, significant (P < .05) bivariate correlators with Work Ability Index (WAI) were entered as independent variables in a categorical regression. Elastic net regularization maintained the most parsimonious set of independent variables significantly associated with variation in WAI as the dependent variable. Process analysis of significant independent variable associations with WAI was performed. MAIN OUTCOME MEASUREMENT: WAI. RESULTS: From 42 bivariate correlates of WAI, multivariate regression displayed a total of seven variables that were significantly (F [25,98] = 5.74, P < .05) associated with 65.8% of the variation in WAI. The Neck Disability Index (NDI) and Fear-Avoidance Beliefs Questionnaire Work subscale (FABQ-W) were significant individual factors within the final regression model. Process analysis displayed FABQ-W having a significant specific indirect association with the direct association between NDI and WAI, with the model associated with 77% of the variability in WAI (F [2,84] = 141.17, P < .001). CONCLUSION: Of 64 candidate biopsychosocial factors, NDI and FABQ-W were the most significant multivariate correlates with work ability. FABQ-W has a significant indirect association with baseline NDI scores and perceived work ability. This warrants future research trialing work-related fear avoidance interventions in conservatively managed patients with cervical radiculopathy. LEVEL OF EVIDENCE: III.

Analysis of the functional capacity outcome measures for myotonic dystrophy.

OBJECTIVES: Defining clinically relevant outcome measures for myotonic dystrophy type 1 (DM1) that can be valid and feasible for different phenotypes has proven problematic. The Outcome Measures for Myotonic Dystrophy (OMMYD) group proposed a battery of functional outcomes: 6-minute walk test, 30 seconds sit and stand test, timed 10 m walk test, timed 10 m walk/run test, and nine-hole peg test. This, however, required a large-scale investigation, METHODS: A cohort of 213 patients enrolled in the natural history study, PhenoDM1, was analyzed in cross-sectional analysis and subsequently 98 patients were followed for longitudinal analysis. We aimed to assess: (1) feasibility and best practice; (2) intra-session reliability; (3) validity; and (4) behavior over time, of these tests. RESULTS: OMMYD outcomes proved feasible as 96% of the participants completed at least one trial for all tests and more than half (n = 113) performed all three trials of each test. Body mass index and disease severity associate with functional capacity. There was a significant difference between the first and second trials of each test. There was a moderate to strong correlation between these functional outcomes and muscle strength, disease severity and patient-reported outcomes. All outcomes after 1 year detected a change in functional capacity except the nine-hole peg test. CONCLUSIONS: These tests can be used as a battery of outcomes or independently based on the shown overlapping psychometric features and strong cross-correlations. Due to the large and heterogeneous sample of this study, these results can serve as reference values for future studies.

Construct validity and test-retest reliability of the Swedish version of the Acceptance of Chronic Health Conditions Scale.

The Acceptance of Chronic Health Conditions Scale was developed to measure acceptance in chronic health conditions like multiple sclerosis (MS) and has been translated into Swedish (The Swedish Acceptance of Chronic Health Conditions Scale). The purpose of the present study was to evaluate construct validity and test-retest reliability of the Swedish Acceptance of Chronic Health Conditions Scale in a sample of 138 people with MS. Predefined hypotheses about relationships between the Swedish Acceptance of Chronic Health Conditions Scale and other measures, and the scale's ability to differentiate between groups were explored. Evaluations of reliability and measurement error were performed for both Swedish Acceptance of Chronic Health Conditions Scale sum scores and individual items. Most (78%) a priori formulated construct validity hypotheses were confirmed. Reliability was considered good (intraclass correlation coefficient = 0.80, and weighted kappa values ranging from 0.29 to 0.74). Measurement errors were acceptable (standard error of measurement 3.3 points, limits of agreement -7.5 and 10, and percentage agreement ranging from 42% to 58%). The findings give evidence of both satisfactory construct validity and test-retest reliability and indicate that the Swedish Acceptance of Chronic Health Conditions Scale can be considered for use in both research and clinical practice.

Consensus-based care recommendations for adults with myotonic dystrophy type 1.

PURPOSE OF REVIEW: Myotonic dystrophy type 1 (DM1) is a severe, progressive genetic disease that affects between 1 in 3,000 and 8,000 individuals globally. No evidence-based guideline exists to inform the care of these patients, and most do not have access to multidisciplinary care centers staffed by experienced professionals, creating a clinical care deficit. RECENT FINDINGS: The Myotonic Dystrophy Foundation (MDF) recruited 66 international clinicians experienced in DM1 patient care to develop consensus-based care recommendations. MDF created a 2-step methodology for the project using elements of the Single Text Procedure and the Nominal Group Technique. The process generated a 4-page Quick Reference Guide and a comprehensive, 55-page document that provides clinical care recommendations for 19 discrete body systems and/or care considerations. SUMMARY: The resulting recommendations are intended to help standardize and elevate care for this patient population and reduce variability in clinical trial and study environments.