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.

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.

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.

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.

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.

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 ).

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.

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.

Associations between fatigue impact and lifestyle factors in people with multiple sclerosis - The Danish MS hospitals rehabilitation study.

BACKGROUND: The lack of medical treatment options to reduce fatigue in patients with multiple sclerosis (MS) emphasize the importance of identifying potential non-pharmacological modifiable factors, as this may help advance current treatment strategies. The aim of this study was to identify potential modifiable lifestyle factors as well as patient- and disease-related characteristics, that are associated with fatigue in a large sample of clinically well-characterized patients with MS. METHODS: This study was a secondary analysis of a pragmatic randomized controlled trial of inpatient multidisciplinary rehabilitation in Denmark. MS patients aged 18 to 65 years and with a disease severity score ≤ 7.5 according to the Expanded Disability Status Scale participated. Data on patient- and disease-related characteristics, fatigue impact (Modified Fatigue Impact Scale (MFIS)), and on lifestyle factors (tobacco smoking, alcohol intake, and physical activity), were collected at baseline. A linear mixed model was used to compare MFIS total, physical, cognitive, and psychosocial scores across subgroups of selected characteristics. Regression analyses were used to examine associations between lifestyle factors and MFIS total, physical, cognitive, and psychosocial scores. RESULTS: In the sample of 417 MS patients, median age was 51 years, 69% were female, median time since diagnosis was 8 years, with 41% having relapsing remitting MS. Higher MFIS total scores were observed in MS patients with shorter time since diagnosis, being a tobacco smoker, and not undertaking regular physical activity. Somewhat similar findings were observed for MFIS subscores (physical, cognitive, psychosocial), especially MFIS physical scores. In the multivariate analyses, physical activity was significantly associated with fatigue impact on total, physical and psychosocial functioning. Tobacco smoking was significantly associated with fatigue impact on psychosocial functioning. Alcohol intake was not associated with fatigue impact. None of the lifestyle factors were associated with fatigue impact on cognitive functioning. In the adjusted models time since diagnosis was significantly associated with fatigue impact on total, physical and cognitive functioning, as was disease severity with fatigue impact on physical and cognitive functioning. CONCLUSION: Physical activity showed the most pronounced associations with fatigue impact on physical and psychosocial functioning, while the impact on cognitive functioning showed a trend. Tobacco smoking contributed significantly to impact on psychosocial functioning, while alcohol intake did not contribute to fatigue impact. Introducing or supporting maintenance of physical activity/exercise and cessation of tobacco smoking seems to be a useful approach for rehabilitation services to help patients with MS manage fatigue.

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.

Employment status of people with multiple sclerosis in relation to 10-year changes in functioning and perceived impact of the disease.

BACKGROUND: Although it is well known that people with multiple sclerosis (PwMS) retire from work early, little is known about how long-term changes in functioning and perceived impact of multiple sclerosis (MS) interact with sustainability of employment. OBJECTIVE: To explore changes in functioning and in perceived impact of MS over 10 years, in relation to employment status of PwMS. METHODS: In order to measure functioning, data on activities (walking ability, fine hand use, personal activities in daily living); participation in activities of everyday life (domestic, outdoor and leisure activities); body functions (cognitive function, fatigue, depressive symptoms); and perceived impact of MS were collected in 116 PwMS at baseline and at a 10-year follow-up. Ten-year changes were explored with the participants divided into four subgroups based on employment status at the follow-up: 1) full-time work at the 10-year follow-up; 2) part-time work at the 10-year follow-up; 3) declined from working at baseline to not working at the 10-year follow-up; and 4) not working at baseline nor at the 10-year follow-up. RESULTS: Patterns of change in functioning for PwMS who worked showed a more apparent deterioration over 10 years among those working part-time with regard to walking ability, fatigue and depressive symptoms. Members of the subgroups who declined from working at baseline to not working at the 10-year follow-up or who were working neither at baseline nor at the follow-up deteriorated the most in functioning. The subgroup whose employment status declined from baseline to follow-up showed a significant decrease in cognitive function and an increase in perceived physical impact of the disease. All subgroups experienced a deterioration in walking ability over the 10-year span, and in all subgroups a majority had limited fine hand use over the span of the study period. CONCLUSION: The deterioration in functioning was most apparent in those PwMS whose employment status declined from working at baseline to not working at the 10-year follow-up. Close monitoring of work situation and frequency of activities and participation in everyday activities, as well as recurrent training of functioning, are suggested for maintaining a high level of functioning and work status, or for supporting transition to an appropriate number of working hours.

Being limited by Parkinson's disease and struggling to keep up exercising; is the group the glue?

Background: People with Parkinson's disease find that exercise helps to improve their physical performance. However, when performed in a group, they also tend to appreciate each other's company.Purpose: After people with Parkinson's disease participated in a community-based group balance exercise program, our aims were to explore the participants' general attitude to their balance ability and exercise, and specifically their experiences of participating in a group exercise.Materials and Methods: Informants were people living with Parkinson's disease at an early stage (n = 15) who had participated in a community-based "Somatosensory Focused Balance Training without Cues." Each informant took part in one face-to-face interview. The interviews were transcribed, according to content analysis, coded independently by two researchers and triangulated together with a third experienced researcher. Categories and themes were derived in consensus.Results: The participants felt limited by their body. They agreed that the group balance exercise program did help with their balance control. Moreover, the vast majority found that the group context implied a positive social contribution to their lives and to their ability to cope with living with the disease.Conclusion: Group balance exercise might constitute a context with potential to improve quality of life for people with Parkinson's disease, not only by improving balance control, but also contributing to social connections, fellowship and the exchange of mutual experiences.Implications for rehabilitationGroup-based exercise in early Parkinson seems to add more than just the physical effects of training, since it also gives a platform for meeting social and emotional needs, as well as addressing physical ability.The group dynamics and the support of peers seem to promote a positive attitude to life and enable people to learn coping strategies from each other.Community-based exercise groups for people with early Parkinson seem to be a way to get out in society and regain a feeling of being part of society.Due to body limits, people with Parkinson's disease must struggle daily, already at an early stage of their disease; this stresses the need to begin rehabilitation early.

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.

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.

Disability and Contextual Factors in Patients with Amyotrophic Lateral Sclerosis - A Three-Year Observational Study.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease characterized by muscle weakness and wasting. Observational natural history studies can give information on body function/structure impairments, activity limitations and participation restrictions, i.e. disability. Information needed to plan and develop care and support. OBJECTIVE: To describe and explore disease severity and impairments, activity limitations, participation restrictions and contextual factors over time. In specific, to explore concurrent presence of cognitive impairment, fatigue, anxiety, depression and pain, and whether these impairments were related to disease severity. METHODS: In this three-year observational study, 60 patients with ALS were included at baseline. Follow-ups were performed every 6 months unless participants had deceased or declined participation. Data was collected from medical records, and by study-specific and standardized questionnaires administrated during home visits. RESULTS: Regardless of disease severity; fatigue, anxiety, depression and pain were present in patients with ALS at each data collection. Approximately one-third experienced two or more of these impairments concurrently, i.e. at the same time point. Cognitive impairment could not be assessed in many patients due to their physical impairments. Disease severity was not associated with fatigue, anxiety, depression or pain. CONCLUSIONS: Patients with ALS need, throughout the course of the disease, to be regularly screened for commonly present impairments, activity limitations and participation restrictions so that person-centered interventions can be applied at the right 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.

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.