Ulrika Einarsson

Activities of daily living and social activities in people with multiple sclerosis in Stockholm County

Objective: To describe independence in personal and instrumental activities of daily living (ADL), and frequency of social/lifestyle activities in a population-based sample of people with multiple sclerosis in Stockholm. Design: Population-based survey. Setting: Data collection in home environment. Subjects: One hundred and sixty-six people with multiple sclerosis. Interventions: Data were collected using measurements and structured interviews. Main measures: Independence in ADL was assessed by the Barthel Index; independence in personal and instrumental ADL by the Katz Extended ADL Index; and frequency of social/lifestyle activities by the Frenchay Activities Index. Results: The mean age was 519 ± 12 years in the included 166 people with multiple sclerosis, of whom 71% (n = 118) were women. Fifty-two per cent (n = 85) were independent in personal ADL, 30% (n = 50) in instrumental ADL, and 35% (n = 57) had normal frequency of social/lifestyle activities. Most frequently affected ADL items were cleaning indoors and outdoors transportation (62%, n = 102) and the social/lifestyle items of household maintenance (59%, n = 97), walking outside (59%, n = 97), heavy housework (61%, n = 100), and gardening (68%, n = 112). Conclusions: ADL and social/lifestyle activities were affected in two-thirds of people with multiple sclerosis in Stockholm. The most affected items were items that could be classified as mobility-related and physically demanding, underlining the importance of developing and using evidence-based exercise treatments and rehabilitation to increase independence in people with multiple sclerosis in Stockholm.

A population-based study of depressive symptoms in multiple sclerosis in Stockholm county: association with functioning and sense of coherence

Objectives: To explore and analyse the prevalence of depressive symptoms in people with multiple sclerosis (PwMS), taking into account disease-related and sociodemographic factors, and also to analyse the association between depressive symptoms and functioning (tested and self-reported) and sense of coherence (SOC), respectively. Methods: Home visits were made to a population-based sample of 166 PwMS. Data were obtained from structured, face-to-face interviews using the Beck Depression Inventory (BDI), the Sickness Impact Profile (SIP) and the SOC scale. A range of tests were also carried out for analyses of different aspects of functioning such as cognitive function, walking capacity and manual dexterity, and structured interviews examined activities of daily living and frequency of social/lifestyle activities. Results: 19% (28/149) of the people were depressed (BDI ⩾13). Depressive symptoms were associated with worse self-reported functioning on the SIP and with poor memory function, but not with any of the other tests of functioning. Depressive symptoms were associated with weak SOC, but not with any of the disease-related or sociodemographic factors studied. Conclusion: The prevalence of depressive symptoms in a population-based sample of PwMS is high. Given the serious nature of depression and its association with worse self-reported functioning and weak SOC, attention to, and treatment of, mental-health problems and depression are strongly indicated in the clinical management of multiple sclerosis.

Health-related quality of life in a population-based sample of people with multiple sclerosis in Stockholm County

The aim of this descriptive, cross-sectional study was to analyse health-related quality of life (HRQoL) in a population-based sample of people with multiple sclerosis (PwMS) in Stockholm County, with respect to disease-related and sociodemographic factors and coping capacity. A further aim was to compare our results on HRQoL - collected by face-to-face interviews at home-visits - with the results from a study with a mail-surveyed sample of PwMS in Stockholm. Home visits were made to 166 PwMS with clinically definite MS. Data were obtained from structured interviews using the Sickness Impact Profile (SIP), EuroQol-5D (EQ-5D) and the Sense of Coherence Scale. HRQoL was widely affected, especially in home management, walking and recreation. Self-rated HRQoL was worse in PwMS, including those with milder disease and shorter disease duration, than in the general population. Factors that were independently associated with large impact on HRQoL were disease severity, work status and coping capacity. The EQ-5D score of PwMS was more favourable when assessed by face-to face interviews at home in our study than in the study using mailed questionnaires. The study gives detailed information on HRQoL and will contribute to the base needed for organizing health care services aimed at improving HRQoL of PwMS in Stockholm.

Cognitive and motor function in people with multiple sclerosis in Stockholm County

The aim of this study was to analyse cognitive and motor function in a population-based sample of people with multiple sclerosis (PwMS), taking into account both disease-related data and sociodemographic factors. Data were collected from 166 PwMS during home visits. Cognitive function was assessed by the Mini-Mental State Examination (MMSE), the Free Recall and Recognition of 12 Random Words Test (FRR12RWT), and the Symbol Digit Modalities Test (SDMT); manual dexterity by the Nine-Hole Peg Test (NHPT); global motor capacity by the Lindmark Motor Capacity Assessment; and walking capacity by a timed 10-metre walk. On cognitive tests, 55% (MMSE), 84% (FRR12RWT), and 45% (SDMT) of PwMS scored within the normal range; 27% of PwMS displayed normal manual dexterity, 9% had a maximal motor-capacity score, and 8% walked at normal speed. Factors associated with normal cognitive function were lower disability and higher education; lower disability and current employment were predictive of capacity to perform the NHPT and to walk 10 metres. In conclusion, cognitive function was normal in approximately half of the PwMS investigated, while a minority displayed normal manual dexterity and normal walking capacity. Thus, both disease severity and socio-demographic factors appear to influence cognitive and motor function in MS.

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

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

Use of health care services and satisfaction with care in people with multiple sclerosis in Stockholm County: A population-based study

Objectives To explore and to describe the use of health, social, and informal care services and satisfaction with care in a population-based sample of people with multiple sclerosis (PwMS) in Stockholm County. Methods The sample consisted of 166 PwMS who participated in the Stockholm MS study. Data on the use of health care services and satisfaction with care and services in PwMS were collected through a computerized register and through home visits to PwMS using structured, face-to-face interviews. Results During the study period of 3 years, 92% had been in contact with out-patient departments of Neurology, and 76% had been in contact with other hospital out-patient departments. Some 83% were in contact with primary care, and primary care contacts constituted 54% of all out-patient care. One third of the PwMS (32%) used home help service (17%) or personal assistants (19%), and higher proportions used informal help from partners (37%). PwMS were in general satisfied with the care received, with the exception of access to coordinated rehabilitation and psychosocial counseling. The proportion of PwMS using inpatient, outpatient, and social/informal (excluding neurological) care increased with the degree of disease severity. Conclusions The great majority of PwMS use hospital specialist care and primary care in parallel, with many departments and services involved. Better accessibility of certain services, for example, psychosocial counseling and rehabilitation, and other improvements, for example efforts to provide coordinated and comprehensive care for PwMS may increase satisfaction with care and should be the focus of scientific evaluation.

Disability and health-related quality of life in Guillain-Barré syndrome during the first two years after onset: a prospective study

Objective: To describe changes in disability and health-related quality of life in patients with Guillain-Barré syndrome in Sweden during the first two years after onset. Subjects: Forty-four patients were recruited from eight different hospitals, and 42 of them (mean age 52 years) were followed for two years. Evaluations were performed, primarily as home visits, at two weeks, two months, six months, one year and two years after onset. Main measures: Disability was measured using the Katz Personal and Extended Activities of Daily Living Indexes, the Barthel Index, the Frenchay Activity Index and assessments of work capacity; health-related quality of life using the Sickness Impact Profile. Results: At two weeks, one year and two years after onset of Guillain-Barrésyndrome, 76%, 14% and 12% of patients were dependent in personal activities of daily life (ADL); and 98%, 28% and 26% were dependent in instrumental ADL. At two weeks, all of the patients that were working before onset were unable to work owing to Guillain-Barré syndrome; at two years, 17% were unable to work. At two weeks, scores on Sickness Impact Profile were elevated in all dimensions; at two years, they remained elevated in the physical dimension and in the categories home management, work and recreation and pastimes. Conclusions: The impact of Guillain-Barré syndrome on ADL, work, social activities and health-related quality is considerable two years after onset and presumably persists beyond this time point.

Multiple sclerosis in Stockholm County. A pilot study exploring the feasibility of assessment of impairment, disability and handicap by home visits

Objective: A pilot study performed within Stockholm County to evaluate the feasibility of collecting data using a comprehensive evaluation package administered in the home environment to assess impairment, disability and handicap in order to explore the consequences of multiple sclerosis (MS). Design: Home visits to 26 purposefully selected MS patients with different levels of disability, in both ordinary and sheltered living. The comprehensive evaluation package included: biographical data, Mini-Mental State Examination, Free Recall and Recognition of 12 Random Words Test, Symbol Digit Modalities Test, Beck Depression Index, Lindmark Motor Capacity Assessment, time to walk 10 metres, Nine-hole Peg Test, Barthel ADL Index, Katz Extended ADL Index, Frenchay Activities Index, Sickness Impact Profile and frequency of falls and injurious falls. Results: This pilot study demonstrates that the proposed methods can be used to evaluate MS patients differing in levels of disability and forms of living. The data collection method, based on home visits, was well accepted by the patients, their spouses and salaried personal assistants and could be performed within 2–21/2 hours. Conclusions: The evaluation package used in this pilot study is suitable for use in population-based studies and it should provide comprehensive information on the impact and consequences of MS on patients, and should contribute to the identification of areas in which the provision of rehabilitation and health care services needs to be improved.

A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: Changes in disability and the value of different factors in predicting disability and mortality

BACKGROUND Most people with multiple sclerosis (PwMS) experience progressively worsening disability over a period of decades, thus further knowledge about the long-term changes in different areas of disability is essential. OBJECTIVES The aims of this study were to evaluate changes in disability over ten years in PwMS, and to explore the value of personal and disease-specific factors and depressive symptoms in predicting disability. A further aim was to explore the value of these factors as predictors of mortality. METHODS This study was based on a 10-year follow-up of a population-based study in Stockholm (n=166). Home visits were used to collect data on personal and disease-specific factors, walking ability, manual dexterity, cognitive function, mood, activities of daily living (ADL) and social/lifestyle activities. RESULTS The proportion of the study population who had disability in cognition, mood and social/lifestyle activities remained stable, while the proportion with disability in walking, manual dexterity and ADL increased. Disease severity predicted an increase in all studied variables of disability except in depressive symptoms. Older age and depressive symptoms were associated with mortality. CONCLUSION This study illustrates the importance of tailored interventions for PwMS and highlights the need for health-care professionals to consider the psychological aspects of the disease. Furthermore, our results indicate that the Expanded Disability Status Scale was a useful tool for predicting future disability.

Multiple sclerosis in Stockholm County. A pilot study of utilization of health‐care resources, patient satisfaction with care and impact on family caregivers

Gottberg K, Einarsson U, Fredrikson S, von Koch L, Widén Holmqvist L. Multiple sclerosis in Stockholm County. A pilot study of utilization of health‐care resources, patient satisfaction with care and impact on family caregivers.