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.

(Over)crowded house: exploring asylum seekers' experiences of the COVID-19 pandemic while living at accommodation centers in Sweden.

BACKGROUND: The COVID-19 pandemic has made visible the scale of health disparities in society, highlighting how the distribution of infection and deaths differs between population subgroups within countries. Asylum seekers represent a potentially vulnerable group; early in the pandemic, concerns were raised about their housing situation, usually involving overcrowded, camp-like accommodations, and the effects of COVID-19 in relation to this. Hence, this study aimed to explore asylum seekers' experiences of the COVID-19 pandemic while living at accommodation centers. METHODS: In this qualitative study, 14 semi-structured interviews were conducted with asylum seekers at two accommodation centers in Sweden. Participants represented a diverse group of asylum seekers in regard to age, educational background, and gender. Data were analyzed using qualitative content analysis. RESULTS: Experiences related to COVID-19 were highly dependent on the living situation at the accommodation centers and the experience of feeling unsafe in shared spaces. This was enhanced by the experiences of a challenging mix of COVID-19 messages where different understandings of COVID-19 and related measures existed, together with a feeling of loss of control and safety in shared rooms. Additionally, participants felt more isolated from the outside society and missed prior social activities. Adding to this experience of isolation was an increasing mistrust regarding the authorities' pandemic response. CONCLUSION: This study highlights the importance of understanding the specific challenges and vulnerabilities of asylum seekers at accommodation centers during the pandemic, shaped by their housing situation and legal status. The findings underscore the need for context-specific support, holistic disease prevention approaches, and tailored health communication strategies using diverse formats. Additionally, the findings emphasize the crucial need to identify and mobilize existing community resources in planning and implementing pandemic control measures. Furthermore, the study emphasizes governmental responsibility in providing secure housing, and to address long-term vulnerabilities beyond pandemics.

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.

Living a frozen life: a qualitative study on asylum seekers' experiences and care practices at accommodation centers in Sweden.

BACKGROUND: Forced migrants fleeing conflict and violence face a high risk of mental health problems due to experiences before displacement, perilous journeys, and conditions in the new host societies. Asylum seekers seem to be in particularly vulnerable situations, indicated by higher prevalence rates of mental health problems compared to resettled refugees. Asylum seekers' mental health is highly influenced by the conditions they face in host countries while awaiting a decision on their case. In Sweden, 40% of asylum seekers reside in state-provided accommodation centers during the asylum process. Collective accommodation centers for asylum seekers have been said to impose restrictive social conditions and to be associated with poorer mental health outcomes than other housing forms (e.g., self-organized housing). However, there seems to be a scarcity of qualitative studies exploring the experiences of asylum seekers in different contexts. The aim of this study was therefore to explore the experiences of asylum seekers and how they manage their mental wellbeing while living at accommodation centers in Sweden. METHODS: Fourteen semi-structured interviews with asylum seekers were conducted at two accommodation centers in Sweden. Participants were recruited using purposeful sampling and represented a diverse group of asylum seekers regarding age, background, and gender. The data was analyzed using content analysis. RESULTS: Three overarching categories were identified; 1) Frozen life, 2) Constant worrying and "overthinking", and 3) Distractions and peer support. Participants experienced a state of being that could be characterized as a frozen life, which was associated with intense feelings of psychological distress, mostly described as manifesting itself in consuming patterns of ruminative thoughts, for instance overthinking and constant worrying. However, despite high levels of distress, participants demonstrated agency in managing negative mental health outcomes through self-care practices, peer support, and the development of care practices in caring for others in need. CONCLUSION: This study offers new insights into the everyday challenges that asylum seekers at accommodation centers face. Furthermore, it offers valuable observations of how asylum seekers at accommodation centers cope through self-care practices, peer support, and care practices in caring for peers in need. In order to enable sustainable and empowering support, mental health and psychosocial support services must identify and address both challenges and strengths, be grounded in the lived reality of asylum seekers, and build on existing resources. Moreover, further policy work needs to be done to enable faster asylum processes.

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.

Facing Invalidation: A Further Challenge when Living with Chronic Widespread Pain.

OBJECTIVE: The concept of "invalidation" refers to the patient's perception that the social environment does not recognize their medical condition. This study explores and describes invalidation experiences among Swedish patients with chronic widespread pain with regard to sociodemographic and pain characteristics, impact of pain, self-reported health, and symptoms of anxiety and depressive. METHODS: A cross-sectional design using questionnaires, including sociodemographic and pain variables, the Illness Invalidation Inventory (Likert scale items regarding 5 sources), the Hospital Anxiety and Depression Scale, and the Short-Form General Health Survey. Descriptive and univariate analyses were applied. RESULTS: Of the 152 respondents, 91% were women. Swedish patients with chronic widespread pain experienced invalidation to a large extent from all sources. The highest scores for invalidation were reported from contacts with social services (68%), and the lowest from spouses (30%). Being younger (p < 0.006), having periodic pain (p = 0.011), and having had more frequent visits to a doctor in the previous year (p = 0.007) were characteristics associated with higher invalidation scores. Experiences of invalidation were associated with worse selfreported mental health scores (r = -0.29 to -0.46). CONCLUSION: Since patients with chronic widespread pain frequently experience invalidation from the social environment, this further challenge in daily life must be taken into consideration in pain management within multimodal pain rehabilitation.

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.

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.

Healthcare Professionals' Experiences of Assessing, Treating and Preventing Constipation Among Older Patients During Hospitalization: An Interview Study.

PURPOSE: Constipation is a common and troublesome condition among older patients and can result in a variety of negative health consequences. It is often undiagnosed or undertreated. Healthcare professionals have a responsibility to understand and address patients' overall healthcare needs; so exploring their experiences is, therefore, highly relevant. The purpose of the study was to explore healthcare professionals' experiences of assessing, treating and preventing constipation among older patients. METHODS: A qualitative design with an exploratory approach was used. The participants (registered nurses and physicians) were purposively sampled from three wards in a geriatric department in a medium-sized hospital in Sweden. Data were collected through focus group discussions and individual interviews, and analyzed using content analysis. RESULTS: Three categories were generated: Reasons for suboptimal management of constipation, Strategies for management, and Approaching the patients' needs. In the care of older patients at risk of or with constipation, decisions were made based on personal knowledge, personal experience and clinical reasoning. A person-centered approach was highlighted but was not always possible to incorporate. CONCLUSION: Different strategies for preventing and treating constipation were believed to be important, as was person-centered care, but were found to be challenging in the complexity of the care situation. It is important that healthcare professionals reflect on their own knowledge and clinical practice. There is a need for more support, information and specific guidance for healthcare professionals caring for older patients during hospitalization. Overall, this study underscores the importance of adequate access to resources and education in constipation management and that clinical guidelines, such as the Swedish Handbook for Healthcare, could be used as a guide for delivering high-quality care in hospitals.

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.

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.

A qualitative study of cognitive behavioural therapy in multiple sclerosis: experiences of psychotherapists.

PURPOSE: To investigate how psychotherapists experience using individual, face-to-face cognitive behavioural therapy (CBT) aimed at alleviating depressive symptoms in persons with multiple sclerosis (MS). METHOD: Semi-structured interviews with three psychotherapists were conducted after CBT with 12 participants with MS, and analysed using qualitative content analysis. RESULTS: Two main themes emerged: Trusting their expertise as psychotherapists whilst lacking MS-specific knowledge, and The process of exploring the participants' readiness for CBT with modifications of content and delivery. The psychotherapists perceived it difficult to know whether a symptom was attributable to depression or to MS, and for some participants the CBT needed to be adapted to a more concrete content. CONCLUSIONS: Psychotherapists may need more MS-specific knowledge and an insight into the individual's functioning. The content of CBT in terms of concrete home assignments and behavioural activation needs to be individualised.

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

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

A single-group pilot feasibility study of cognitive behavioural therapy in people with multiple sclerosis with depressive symptoms.

PURPOSE: The aims were to evaluate (a) the feasibility of face-to-face cognitive behavioural therapy (CBT) in people with MS (PwMS) with depressive symptoms; (b) the feasibility of methods and measurements used; and (c) the outcome of the intervention before the conducting of an equivalence study of comparative methods of face-to-face CBT. DESIGN: A single-group pilot feasibility study. PATIENTS: PwMS (n = 15) with sub-threshold to moderate depressive symptoms, recruited at the Karolinska University Hospital, Stockholm, Sweden. METHODS: The intervention consisted of 15-20 sessions of face-to-face CBT. Feasibility outcomes included recruitment rate, recruitment procedure and adverse events. Primary clinical outcome was the Beck Depression Inventory-II (BDI-II). Follow-ups were conducted after 3 weeks and 3 months. An estimated sample size calculation was conducted. RESULTS: The face-to-face CBT intervention, methods and measurements used were feasible. The outcome on BDI-II indicated that face-to-face CBT is an effective method for alleviating sub-threshold to moderate depressive symptoms in PwMS. CONCLUSION: Face-to-face CBT is feasible for use in PwMS aiming at decrease depressive symptoms. For an equivalence study, a screening process for depressive symptoms and two comparative intervention arms including traditional face-to-face CBT and low-intensity face-to-face CBT is recommended. Primary outcomes should include the BDI-II and also assessment of anxiety symptoms. Implications for Rehabilitation Depression is common among people with MS (PwMS), however, depressed PwMS do not always receive adequate treatment for depression which may lead to increased disability and worse health-related quality of life (HRQL). Cognitive behavioural therapy (CBT) is a psychological treatment method that might be beneficial for PwMS with depressive symptoms, but the evidence is still weak and further research is needed. The results from our pilot feasibility study demonstrate that for an effectiveness study of face-to-face CBT for PwMS with sub-threshold to moderate depressive symptoms the following points should be acknowledged. The design of an effectiveness study should be a randomized controlled trial including two treatment arms: traditional face-to-face CBT and a low-intensity face-to-face CBT. To increase the inclusion rate a screening process for depressive symptoms is recommended. Primary outcomes besides the Beck Depression Inventory-II should include the Hospital Anxiety and Depression Scale in order to capture anxiety symptoms and the Multiple Sclerosis Impact Scale-29 to capture HRQL.

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

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

Health-related quality of life in partners of persons with MS: a longitudinal 10-year perspective.

OBJECTIVES: Multiple sclerosis (MS) impacts the health-related quality of life (HRQL) in partners, but knowledge on the longitudinal perspective is needed. The aim was to analyse HRQL in partners of persons with MS living in Sweden a decade ago and after 10 years. MATERIALS AND METHODS: Partners were identified through a population-based study of persons with MS in Stockholm. Information on HRQL (the Sickness Impact profile), personal factors and disease-specific factors, and measures of functioning of persons with MS was collected at both time points mainly by home visits. RESULTS: Some 64 of 102 identified partners (63%) agreed to participate at baseline, and at 10 years 40 of 54 eligible partners were included (74%). HRQL in partners was worse than in a Swedish, aged-grouped reference population at both baseline and follow-up. Depressive symptoms in persons with MS were independently associated with worse HRQL in partners. CONCLUSIONS: Depressive symptoms in persons with MS were associated with worse HRQL in their partners, and HRQL of partners was continuously impacted in the longitudinal perspective. This knowledge needs to be accounted for in the planning of MS care, together with the development of evidence-based support for depressive symptoms, and engagement in recreational life in both partners and persons with MS.

A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: changes in health-related quality of life and the value of different factors in predicting health-related quality of life.

BACKGROUND: Health-related quality of life (HRQL) in people with multiple sclerosis (PwMS) is negatively affected compared to that of the general population. Cognitive impairment and depressive symptoms have been shown to predict worse HRQL in a short-term perspective. Considering the progressive nature of MS, it is essential to include the long-term (10 years) perspective of HRQL in PwMS. OBJECTIVES: The aim of this 10-year follow-up of a population-based sample of PwMS was to explore changes in and the predictive value of personal factors, degree of MS disability, depressive symptoms and cognitive impairment on HRQL. METHODS: Data on personal and disease-specific factors, mood, and cognitive function was collected. Data on HRQL was collected, seen as a health profile with the Sickness Impact Profile, as a health index with the EuroQol 5D and as a single global question with the EQ Visual Analog Scale. RESULTS: HRQL worsened over 10 years according to the health profile (Sickness Impact Profile Total and its physical dimension) and according to the health index. The effect sizes were small. HRQL assessed with the single global question remained unchanged. Depressive symptoms and cognitive impairment predicted worse HRQL. CONCLUSION: In a 10-year perspective the HRQL with regard to its physical domain or when seen as a total health profile tends to get worse in PwMS. Yet, HRQL with regard to its psychosocial domain and with regard to PwMS' self-rated health, remains stable. There is a potential for health-care professionals to decrease the impact of modifiable factors on HRQL in PwMS by identifying those with depressive symptoms and/or cognitive impairment and initiating evidence-based treatment as well as meeting the need for environmental facilitators aiming at reducing disability.