Study protocol for the 'preventing functional decline in acutely hospitalised older patients (PREV_FUNC)' study: effects of two multicomponent exercise programmes on physical function - a three-armed randomised controlled trial.

INTRODUCTION: Acutely hospitalised older patients often live with frailty and have an increased risk of impaired physical function. Previous studies suggest that exercise might mitigate the risk of physical impairment; however, further research is needed to compare the effect of different types of exercise interventions. In this paper, we report a protocol for a trial that aims to examine (1) if multicomponent exercise interventions (interventions that include both mobility and strengthening exercises) have effects on physical function compared with usual care in older adults and (2) if a comprehensive multicomponent exercise programme is more effective than a simple multicomponent exercise programme that only include walking and sit-to-stand exercises. METHODS AND ANALYSIS: This is a three-armed randomised controlled trial, with two intervention groups (comprehensive and simple exercise programme) and a control group receiving usual care. We will include 320 participants aged ≥75 years from geriatric medical departments of four hospitals in Stockholm, Sweden. Assessments will be conducted at hospital admission, discharge and 3 months thereafter concerning physical function (primary outcome), activities of daily living, health-related quality of life, sarcopenia and falls. The number of readmissions will be registered up to 1 year after discharge. Data will be analysed with linear mixed effects models, according to the intention-to-treat approach. ETHICS AND DISSEMINATION: Ethical approval for this trial has been granted by the Swedish Ethical Review Authority (approval number 2022-03032-01). Data collection will consider the information requirement, the requirement of consent, confidentiality obligations and the utilisation requirement. Trial findings will be disseminated through multiple channels, including scientific publications and conferences, and workshops with healthcare professionals and the public. TRIAL REGISTRATION NUMBER: NCT05366075.

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.

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.

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 of health-related quality of life in people with amyotrophic lateral sclerosis.

BACKGROUND: Knowledge of factors influencing health-related quality of life (HRQL) in people with amyotrophic lateral sclerosis (ALS) is important because some factors might be amenable to intervention. OBJECTIVES: The aim was to describe and explore the effects of disease severity, fatigue, anxiety, depression, frequency of social and lifestyle activities, coping capacity and mechanical ventilator use on HRQL in people with ALS. METHODS: Sixty people with ALS were enrolled in this cross-sectional study. Data were collected with questionnaires during home visits. The Sickness Impact Profile and the EuroQol Visual Analogue Scale were used to assess HRQL. Multivariate regression analyses explored associations between HRQL and independent factors. RESULTS: Low frequency of social and lifestyle activities, and severe disease, were associated with worse HRQL, explaining 57% of total variance in the Sickness Impact Profile physical score. Severe disease, weak coping capacity and anxiety and/or depression were associated with worse HRQL, explaining 33% of total variance in Sickness Impact Profile psychosocial score. Fatigue and mechanical ventilator use were associated with worse HRQL, explaining 17% of variance in the EuroQol Visual Analogue Scale. CONCLUSION: Knowledge and understanding of how frequency of social and lifestyle activities, disease severity, coping capacity, anxiety and/or depression, fatigue and ventilator use contribute to and predict self-rated HRQL can optimize person-centred care and support.