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.

Exercise blood pressure and the risk of future hypertension.

The aim of this prospective cohort study was to identify which blood pressure measurement during exercise is the best predictor of future hypertension. Further we aimed to create a risk chart to facilitate the evaluation of blood pressure reaction during exercise testing. A number (n=1047) of exercise tests by bicycle ergometry, performed in 1996 and 1997 were analysed. In 2007-2008, 606 patients without hypertension at the time of the exercise test were sent a questionnaire aimed to identify current hypertension. The response rate was 58% (n=352). During the 10-12 years between exercise test and questionnaire, 23% developed hypertension. The strongest predictors of future hypertension were systolic blood pressure (SBP) before exercise (odds ratios (OR) 1.63 (1.31-2.01) for 10 mm Hg difference) in combination with the increase of SBP over time during exercise testing (OR 1.12 (1.01-1.24) steeper increase for every 1 mm Hg min(-1)). A high SBP before exercise and a steep rise in SBP over time represented a higher risk of developing hypertension. A risk chart based on SBP before exercise, increase of SBP over time and body mass index was created. SBP before exercise, maximal SBP during exercise and SBP at 100 W were significant single predictors of future hypertension and the prediction by maximal SBP was improved by adjusting for time/power at which SBP max was reached during exercise testing. Recovery ratio (maximal SBP/SBP 4 min after exercise) was not predictive of future hypertension.

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.

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 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.

Combination therapy with interferon-beta and glatiramer acetate in multiple sclerosis.

OBJECTIVES: To compare the effects of mono-therapy with interferon-beta (IFN-beta) or glatiramer acetate (GA) with IFN-beta + GA combination therapy for persons with multiple sclerosis (MS). MATERIALS & METHODS: In the context of a longitudinal observational study at the MS Centre, Karolinska University Hospital, Huddinge, 83 persons with MS receiving mono-therapy at baseline were studied. Because of MS worsening 21 switched to IFN-beta + GA combination therapy for 16-24 months, and 62 remained on the same mono-therapy for 24 months. Multiple Sclerosis Functional Composite, cognitive function, depressed mood, relapse occurrence and perceived physical and psychological impact were assessed. Linear mixed-effects models and generalized estimating equations were employed to evaluate changes in each outcome over time. RESULTS: Patients on IFN-beta + GA therapy showed greater change in odds for high perceived psychological impact. No other significant differences between treatments were found. CONCLUSIONS: The results underline the need for a randomized trial of IFN-beta + GA in MS.

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.

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.

Rehabilitation at home after stroke: a descriptive study of an individualized intervention.

OBJECTIVE: To describe the content of a programme involving early hospital discharge and continued rehabilitation at home after stroke. DESIGN: Quantitative and qualitative descriptive study of an intervention within the context of a randomized controlled trial. SETTING: Huddinge University Hospital, Stockholm, Sweden. SUBJECTS: Forty-one patients, moderately impaired after stroke, rehabilitated by a team of six occupational, physical, and speech and language therapists. RESULTS: The average duration of the programme was 14 weeks, the mean number of home visits 12, and the median total time consumption 23 hours and 20 minutes, of which face-to-face contact with the patient constituted 54%. The rehabilitation process was pursued by the patient and the therapist in partnership. Supported by the team the therapists incorporated a wider domain of activities than usual and left a considerable amount of the training to self-directed activities. The most common foci of the visits were speech and communication, ADL activities and ambulation. When planning the intervention the therapists paid attention to discrepancies between the desires and abilities of the patient on the one hand and environmental demands on the other - discrepancies detected through observation of the patient in the home environment. CONCLUSIONS: The home environment offers therapists working in a team opportunities to adopt a behaviour that enables patients with moderate neurological impairments after stroke to resume responsibility and influence over their rehabilitation process, resulting in an individualized rehabilitation programme that varies in duration, content and frequency of home visits.

Stroke patients in south Madrid: function and motor recovery, resource utilization, and family support.

BACKGROUND AND PURPOSE: The purpose of the present study was to describe the epidemiology of stroke disability and the use of health resources in South Madrid. METHODS: Among a population of 665 168 residents in South Madrid, patients with an acute stroke of clinical onset during March to July 1996 who were seen at a general hospital or at 1 of 3 primary care centers were evaluated at baseline (n=147) and at 3 months (n=110) and 6 months (n=112) after stroke. We assessed the frequencies of stroke and stroke-related residual disability per population unit, as well as the impairment, disability, secondary complications, use of health resources, and impact on quality of life. RESULTS: In patients > or =60 years old, the incidence of stroke with severe residual disability after 6 months was 75 per 10 000, was higher in men, and increased with age; the proportion of survivors among those examined at baseline was 20%. The use of hospital days per population unit was similar to that of reported European data, but the use of other health care resources was less. Patients frequently used bladder and nasal catheters and presented with shoulder pain. Social activities were infrequent and decreased after stroke. Access to technical aids was limited, and home adaptations were exceptional. The impact of stroke on health-related quality of life among patients and main caregivers was modest. CONCLUSIONS: The study shows that in South Madrid, (1) the use of health resources after stroke is low; (2) patients with stroke register low activities of daily living scores with a comparatively small impact on quality of life; and (3) relative to need, the use of rehabilitation, aids, and home adaptations and services was low.

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.

Use of healthcare, impact on family caregivers and patient satisfaction of rehabilitation at home after stroke in southwest Stockholm.

We previously conducted a randomized controlled trial in which early supported discharge from the Department of Neurology at Huddinge Hospital in southwest Stockholm with continuity of rehabilitation at home (n = 41) was compared to routine rehabilitation services (n = 40) for moderately disabled selected stroke patients. No statistical significant differences were found in patient outcome at 3 or 6 months, but a moderately positive effect in the home rehabilitation group was suggested. In the present study we evaluated resource utilization of health and social care, impact on family caregivers during 6 months after acute stroke and patient satisfaction. A 50% reduction in total hospitalization (initial and recurrent) was observed, from 30 days in the routine rehabilitation group to 15 days in the home rehabilitation group (p < 0.001). After discharge, the mean number of home visits in the home rehabilitation group was 12. In total, the routine rehabilitation group had a higher frequency of therapy contacts and daycare in outpatient care. Seventy-eight percent received help from a family caregiver in activities of daily living, yet only 15% had formal home help service. No major differences were found in use of home help service or impact on family caregivers in the form of time devoted to helping the patient or subjective well-being of spouses as per Sickness Impact Profile. Patient satisfaction was in favour of the home rehabilitation group, but a significant difference was only found in active participation in rehabilitation programme planning. In conclusion, early supported discharge with continuity of rehabilitation at home, using goal-directed functional activities based on the patient's personal interests, should be the rehabilitation service of choice for moderately disabled stroke patients fulfilling certain criteria, provided that further evaluation during the first year after stroke reveals no great changes in outcome or resource use. More research into the effectiveness and cost implications of early supported discharge with continuity of rehabilitation at home is needed in other parts of Sweden and in other countries before it can be asserted that the conclusions drawn from this study are applicable elsewhere.

Rehabilitation in the home versus the hospital: the importance of context.

PURPOSE: Stroke rehabilitation has received increased attention in the past decade. Recent trials with new alternatives such as home-based rehabilitation services are being conducted. The purpose of the study was to explore differences between a therapy session with a stroke patient in two different contexts, i.e. in the patient's home and in the hospital. METHODS: The research design was a qualitative case study. Three data collection methods were used; participant observations of therapy sessions in two different contexts, semi-structured interviews and documents. RESULTS: The data were examined and coded for common categories. Analysis of the data looking for similarities and differences in behaviour of two therapists and their patients during therapy sessions in the hospital and in the home was performed. The observations revealed that there was clearly a difference in behaviour; a different role-set used by the two therapists when working in the patient's home versus in the hospital. The major difference in patient behaviour was that the patient, observed in his home, took the initiative and expressed his goals, which was not the case with the patients observed in the hospital. The findings were confirmed in the interviews and the documents. CONCLUSION: It is suggested that the context is a key component to be considered in the rehabilitation process of stroke patients.