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.

Location and severity of spasticity in the first 1-2 weeks and at 3 and 18 months after stroke.

BACKGROUND AND PURPOSE: There is no consensus concerning the location or severity of spasticity, or how this changes with time after stroke. The purpose was to describe: the location and severity of spasticity, in different muscle groups, during the first 1-2 weeks and at 3 and 18 months after stroke; the association between the severity of spasticity and control of voluntary movements; and the occurrence of spasticity in younger versus older patients. METHODS: In a cohort of consecutive patients, the following parameters were assessed during the first 1-2 weeks (n = 109) and at 3 (n = 95) and 18 (n = 66) months after first-ever stroke: spasticity, by the Modified Ashworth Scale in different muscle groups; plantar-flexor clonus, by physical examination; and movement function, by the Lindmark Motor Assessment Scale. RESULTS: During the first 1-2 weeks and at 3 months after stroke, spasticity was most common in the anti-gravity muscles. The severity of upper extremity spasticity increased over time (P < 0.05). Upper extremity spasticity and movement scores were moderately associated (r = -0.61, P < 0.05). At 3 months, spasticity was more common amongst the younger patients (P < 0.05). CONCLUSIONS: The results confirm that spasticity is most common in the anti-gravity muscles and is associated with the control of voluntary movements. As the severity of spasticity also increased after 3 months, when neurally mediated spasticity is expected to have passed its peak, intrinsic muscle changes may play a larger role than neural components with the passage of time after stroke.

Use of health services in people with multiple sclerosis with and without fatigue.

OBJECTIVE: To explore and compare the use of health services in people with multiple sclerosis (MS) with and without fatigue. METHODS: Over a period of 30 months, the use of health services in 48 MS outpatients with persistent fatigue and 36 without fatigue was studied. Data were collected from a computerized register and by interviews, and analyzed with regard to disease severity categorized as mild or moderate/severe MS. RESULTS: Fatigued people with mild MS used more hospital outpatient care and primary care including rehabilitation, and a higher proportion had transportation service, compared with non-fatigued people with mild MS. In moderate/severe MS, the differences were that non-fatigued people used more occupational therapy in primary care and a higher proportion had salaried service. Regardless of MS severity, informal care was more common among fatigued people. CONCLUSIONS: Overall, fatigued people with mild MS have more contacts with outpatient health care compared with non-fatigued people. There are few such differences in people with moderate/severe MS. The reasons for the differences in use between fatigued and non-fatigued people are not understood and need further exploration. Fatigued people more often receive informal care, thus support to caregivers are of particular importance if fatigue is present.

A longitudinal study of variations in and predictors of fatigue in multiple sclerosis.

OBJECTIVES: To describe variations in fatigue over the course of 2 years in a sample of persons with multiple sclerosis (MS), and to investigate the predictive value of the following variables on variations in fatigue: sex, age, sense of coherence, living with a partner, living with children, work status, immunomodulatory treatment, mood, disease severity, disease course, time since diagnosis and time. METHODS: Every 6 months, 219 outpatients at an MS specialist clinic were assessed using the Fatigue Severity Scale (FSS). Predictive values were explored with Generalised Estimating Equation employing proportional odds models; FSS scores were categorised as non-fatigue, borderline fatigue or fatigue. RESULTS: FSS scores varied significantly (p = 0.02); 54% changed FSS category one or several times, 27% were persistently fatigued and 19% persistently non-fatigued. Independent predictors of increased fatigue were depressive symptoms, weak/moderate sense of coherence, living with a partner and not working. Furthermore, moderate disease severity predicted increase when combined with >10 years since diagnosis or a progressive course. Independent predictors of decreased fatigue were no depressive symptoms, strong sense of coherence, living alone and working. Moreover, mild and severe disease predicted a decrease when combined with >10 years since diagnosis, and mild severity combined with a progressive course. CONCLUSION: Mood, sense of coherence and living with a partner were independent predictors of fatigue in persons with MS. In addition to monitoring disease related variables, health related services should apply a broad range of approaches and repeatedly assess fatigue in persons with MS, to provide preventive care and appropriate interventions.

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.

Randomized controlled trial of rehabilitation at home after stroke: one-year follow-up of patient outcome, resource use and cost.

BACKGROUND AND PURPOSE: This study sought to evaluate early supported discharge and continued rehabilitation at home after stroke, at a minimum of 6 months after the intervention, in terms of patient outcome, resource use and health care cost. METHODS: Eighty-three patients, moderately impaired 5-7 days after acute stroke, were included in a randomized controlled trial, 42 being allocated to the intervention and 41 to routine rehabilitation. One-year follow-up of patient outcome included mortality, motor capacity, dysphasia, activities of daily living, social activities, perceived dysfunction, and self-reported falls. Resource use over 12 months included inpatient hospital care, outpatient health care, use of health-related services, informal care, and cost of health care. RESULTS: On univariate analysis there was no difference in patient outcome. Multivariate regression analysis showed that intervention had a significant effect on independence in activities of daily living. A significant difference in inpatient hospital care, initial and recurrent, was observed, with a mean of 18 (intervention) versus 33 days (control) (p = 0.002). Further significant differences were that the control group registered more outpatient visits to hospital occupational therapists (p = 0.02), private physical therapists (p = 0.03) and day-hospital attendance (p = <0.001), while the intervention group registered more visits to nurses in primary care (p = 0.03) and home rehabilitation (p = <0.001). Other differences in outcomes or resource utilization were nonsignificant. CONCLUSION: In Sweden, early supported discharge with continued rehabilitation at home proved no less beneficial as a rehabilitation service, and provided care and rehabilitation for 5 moderately disabled stroke patients over 12 months after stroke onset for the cost of 4 in routine rehabilitation.

A randomized controlled trial of rehabilitation at home after stroke in Southwest Stockholm: outcome at six months.

A 6-month follow-up of a single-blind, randomized, controlled trial in Southwest Stockholm was performed in order to evaluate the effect of early supported discharge and continued rehabilitation at home after stroke. Eighty-three stroke patients with moderate neurological impairments, continent, independent in feeding, and mental function within normal limits one week after onset were included in the study. The patients were allocated 1:1 to early supported discharge and continued rehabilitation at home by a specialized team, versus routine rehabilitation. Patient outcomes measured were motor capacity, dysphasia, activities of daily living, social activities, perceived dysfunction, mortality and reported falls. Data on length of stay in hospital; initial and recurrent during 6 months were compared. The 6-month follow-up of 78 patients showed no statistically significant differences in patient outcome. The results of multivariate logistic regression analysis suggest a positive effect of home rehabilitation on activities of daily living. At 3-6 months the frequency of significant improvements was higher in the intervention group. Death or dependency in activities of daily living was 24% in the intervention group compared with 44% in the control group. The mean initial hospitalization was 29 days in routine rehabilitation group versus 14 days in the home rehabilitation group. We conclude that for moderately disabled stroke patients with mental function within normal limits, early supported discharge and continued rehabilitation at home had no less a beneficial effect on patient outcome than routine rehabilitation, reduced initial hospitalization significantly and had no adverse effects on mortality and number of falls.

A randomized controlled trial of rehabilitation at home after stroke in southwest Stockholm.

BACKGROUND AND PURPOSE: This study describes the methodology, patient outcome, and use of hospital and rehabilitation services at 3 months of a population-based randomized controlled trial. The purpose was to evaluate rehabilitation at home after early supported discharge from the Department of Neurology, Huddinge Hospital, for moderately disabled stroke patients in southwest Stockholm. METHODS: The patients were eligible if they were continent, independent in feeding, had mental function within normal limits, and had impaired motor function and/or aphasia 1 week after stroke. Patients were randomized either to early supported discharge with continuity of rehabilitation at home for 3 to 4 months or to routine rehabilitation service in a hospital, day care, and/or outpatient care. The home rehabilitation team consisted of two physical therapists, two occupational therapists, and one speech therapist; one of the therapists was assigned as case manager for the patient. The rehabilitation program at home emphasized a task- and context-oriented approach. The activities were chosen on the basis of the patient's personal interests. Spouses were offered education and individual counseling. A total of 81 patients were followed up for a minimum of 3 months. Patient outcome was assessed by the Frenchay Social Activity Index, Extended Katz Index, Barthel Index, Lindmark Motor Capacity Assessment, Nine-Hole Peg Test, walking speed over 10 m, reported falls, and subjective dysfunction according to the Sickness Impact Profile. Patient use of hospital and home rehabilitation service and patient satisfaction with care were studied. RESULTS: Overall there were no statistical significant differences in outcome. Multivariate logistic regression analysis suggested a systematic positive effect for the home rehabilitation group in social activity, activities of daily living, motor capacity, manual dexterity, and walking. A considerable difference in resource use during such a 3-month period was seen. A 52% reduction in hospitalization was observed: from 29 days in the routine rehabilitation group to 14 days in the home rehabilitation group. Patient satisfaction was in favor of the latter group. CONCLUSIONS: Early supported discharge with continuity of home rehabilitation services for the majority of moderately disabled stroke patients during the first 3-month period after acute stroke is not less beneficial than routine rehabilitation and can be a rehabilitation service of choice if follow-up at 6 and 12 months confirms the suggested effectiveness and considerable reduction in use of health care.

A pilot study of rehabilitation at home after stroke: a health-economic appraisal.

This study aimed at describing the health-economic implications and organisational issues of rehabilitation at home in south-west Stockholm of 15 acute stroke patients, mean age 68.2, male:female ratio 9:6, independent in feeding and continent one week after their stroke. Average patient satisfaction with different dimensions of care was 92%. Perceived dysfunction, by means of the Sickness Impact Profile, 3 months after stroke was highest for Recreation-and-Pastime, Home Management and Ambulation. Between 3-12 months after stroke, functional improvement was particularly seen in Home Management, Recreation-and-Pastime and Emotional Behaviour. Three fourths of the patients received help with different ADL tasks from a family caregiver and 1/5 from home service assistants. According to the scores for subjective health of the spouses and time used to help the patient, the burden that the programme put on the patient's family was modest, temporary and in accordance with preferences reported by the elderly in Sweden. The mean duration of hospital stay for patients under rehabilitation at home was 14 days and for a selected comparison group with similar ADL-grade, 27 days. The mean number of therapy sessions at home was 11. Each home visit took 3.2 hours, 60% of which were direct patient time. In the selected comparison group, 1/3 was referred to other departments for rehabilitation and care, and 40% had contacts with day-care and paramedical professionals after discharge from the hospital. During the first year after stroke, the average, direct, per capita cost for rehabilitation at home amounted to SEK 127,730 divided between hospital care (50%), followed by contribution by family caregivers (18%), rehabilitation at home (10%), out-patient visits to physicians and nurses (8.8%), home-help service (7%), auxiliary equipment (2%), medication (1.5%), home adaptation (1%) and transportation service (0.3%). This organisational model of home-based rehabilitation of stroke patients constitutes a feasible, possibly less expensive alternative and complement to current rehabilitation in hospital and primary care, which could be further developed and evaluated.

Intervention design for rehabilitation at home after stroke. A pilot feasibility study.

This study aimed at identifying the characteristics and feasibility of rehabilitation at home for acute stroke patients in south-west Stockholm. A population-based systematic sample of 16 patients, fulfilling defined criteria, was selected from approximately 1/3 of the stroke patients having been in hospital for one week or more at a neurology department, and offered early discharge in combination with home-based rehabilitation as an alternative to sustained rehabilitation in hospital. Fifteen patients, mean age 68.2 years, male/female ratio 9/6, independent in feeding and continent one week after acute stroke, participated in the study. The most important components of the home-based rehabilitation programme were that: 1) one therapist was selected as case-manager using the other therapists on a consultant basis; 2) the training sessions consisted of different task-specific activities, based on the patients' personal interest; 3) education and individual counselling were offered to all spouses; and 4) adherence to structured training between therapy sessions was promoted. The length of such programmes varied from 4 to 19 weeks after discharge and the mean number of home visits was 11. Reported time for training between therapy sessions for 14 patients was mean 1.2 hours per day. The patients' lifestyle activities, personal and instrumental ADL, and motor capacity at 3, 6 and 12 months after stroke, assessed by validated and reliable methods, followed patterns similar to those reported for other stroke patients. The mean time in hospital for patients in the study was 14 days; for patients with similar ADL capacity but not included in the study it was 27 days.(ABSTRACT TRUNCATED AT 250 WORDS)

Stroke rehabilitation in Stockholm. Basis for late intervention in patients living at home.

In order to identify the basis of late-therapy intervention in patients with stroke, we studied a population-based sample of 20 patients. The requests were that they should be living at home 1-3 years after being hospitalized, and that they had declared themselves in need of rehabilitation services. The assessment of abilities and activities of the patients was related to the model of human occupation developed by Kielhofner and co-workers. Most individuals reported a change in activity and interest patterns after stroke, and high motivation in current activities. The cognitive functions were within normal limits for all tested patients. However, the motor abilities and verbal performances were frequently affected and varied considerably. About 3/4 of the patients were not motivated to change their level of dependence in personal and instrumental ADL. Social and leisure activities outside the home were identified as the most promising goals for community-based rehabilitation programmes. Focusing on such activities, potential improvement in quality of life for this population could be achieved by individually-planned rehabilitation programmes using non-professional collaborators and patient organizations.

Stroke rehabilitation: identification of target groups and planning data.

In order to ascertain the need for late stroke rehabilitation in South-West Stockholm (SWS) and explore the conditions for experimental stroke outcome research, we followed a population-based, systematic sample of incident stroke patients, hospitalized during the period 1987-1988, using computer files and a telephone interview. The annual incidence of first-ever or recurrent transitory ischaemic attack (TIA) or acute stroke during the period was 2.83 per 1000. In December 1989, approximately 3% of these incident patients declared subjective residual dysfunction, were living at home and were considered potential candidates for rehabilitation. The estimated prevalence of home-bound individuals with residual dysfunction due to stroke was 0.74 per 1000 (95% CI 0.51-1.04). The average duration of hospitalization for these patients was 95.2 days. Approximately 3/4 of them were interested in further conventional rehabilitation. The group not interested in this therapy were mainly females and were older. They scored lower in personal ADL and mental activity, but similarly in motor function. We concluded that the prevalence need for rehabilitation after stroke in the SWS community amounted to at least 1/1000. Early rehabilitation in the community, linked to post-acute stroke care with reduction of hospital stay would be functionally and socially advantageous and cost-effective for more than 25% of the incident stroke cases. Stroke rehabilitation and clinical follow-up are closely related processes that should be evaluated simultaneously.

Evaluation of stroke rehabilitation by randomized controlled studies: a review.

In all, 22 reports of 20 randomized, controlled rehabilitation studies were evaluated. In 18 of these, the design of the trial was parallel, with a cross-over format being employed in the remaining 2 instances. Seven studies related to intensive rehabilitation during the early post-acute period. In six others, specific techniques--sometimes associated with traditional physiotherapy procedures--were compared: biofeedback, perceptual retraining, and amphetamine treatment. Eight experiments evaluated speech therapy in aphasia. Frequently, methodological considerations limited the interpretation of the results. The review showed that: 1) as regards activities of daily life and motor function, differences as between rehabilitation in stroke units on the one hand and non-rehabilitation or rehabilitation in medical wards on the other, were detected in relatively few quality studies and remained particularly inconclusive insofar as life in the home environment was concerned; 2) rehabilitation for aphasia and perceptual dysfunction proved effective for at least several months after acute stroke; 3) in general, examination of the reports cited revealed no differences in the effects of biofeedback and perceptual retraining vs conventional physiotherapy; 4) rehabilitation, whether administered by specialists or amateur caregivers purpose-trained by specialists, proved equally effective for aphasia. These conclusions constitute a valuable basis for the development and evaluation of modern rehabilitation programs for stroke patients.