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.

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.

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 > or = 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.

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 51 +/- 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.

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 motorcapacity 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 sociodemographic factors appear to influence cognitive and motor function in MS.

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 2-2 1/2 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.

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

Multiple sclerosis (MS) is a progressive, incurable neurological disease with a large impact on the person/people with MS (PwMS), the family of the PwMS, medical resources and the community. We have explored the feasibility of calculating utilization of health-care resources within Stockholm County and evaluated methods for interviewing PwMS and family caregivers in their homes. Home visits were made to 26 PwMS with different levels of disability, both in ordinary and sheltered living. Questionnaires assessing patient satisfaction, the use of technical aids and home adaptations, help from municipal and family caregivers, and health-related quality of life were administered in the form of structured interviews. Utilization of health-care resources was evaluated with the help of an available computerized register. The study shows that the chosen methods are feasible for PwMS, irrespective of level of disability or form of living. They are well accepted by both PwMS and family caregivers and need only minor modifications in order to be suitable for a population-based study.