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.

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.

Predictors of health-related quality of life in people with amyotrophic lateral sclerosis.

BACKGROUND: Knowledge of factors influencing health-related quality of life (HRQL) in people with amyotrophic lateral sclerosis (ALS) is important because some factors might be amenable to intervention. OBJECTIVES: The aim was to describe and explore the effects of disease severity, fatigue, anxiety, depression, frequency of social and lifestyle activities, coping capacity and mechanical ventilator use on HRQL in people with ALS. METHODS: Sixty people with ALS were enrolled in this cross-sectional study. Data were collected with questionnaires during home visits. The Sickness Impact Profile and the EuroQol Visual Analogue Scale were used to assess HRQL. Multivariate regression analyses explored associations between HRQL and independent factors. RESULTS: Low frequency of social and lifestyle activities, and severe disease, were associated with worse HRQL, explaining 57% of total variance in the Sickness Impact Profile physical score. Severe disease, weak coping capacity and anxiety and/or depression were associated with worse HRQL, explaining 33% of total variance in Sickness Impact Profile psychosocial score. Fatigue and mechanical ventilator use were associated with worse HRQL, explaining 17% of variance in the EuroQol Visual Analogue Scale. CONCLUSION: Knowledge and understanding of how frequency of social and lifestyle activities, disease severity, coping capacity, anxiety and/or depression, fatigue and ventilator use contribute to and predict self-rated HRQL can optimize person-centred care and support.

Developing Leadership in Managers to Facilitate the Implementation of National Guideline Recommendations: A Process Evaluation of Feasibility and Usefulness.

BACKGROUND: Previous research supports the claim that managers are vital players in the implementation of clinical practice guidelines (CPGs), yet little is known about interventions aiming to develop managers' leadership in facilitating implementation. In this pilot study, process evaluation was employed to study the feasibility and usefulness of a leadership intervention by exploring the intervention's potential to support managers in the implementation of national guideline recommendations for stroke care in outpatient rehabilitation. METHODS: Eleven senior and frontline managers from five outpatient stroke rehabilitation centers participated in a four-month leadership intervention that included workshops, seminars, and teleconferences. The focus was on developing knowledge and skills to enhance the implementation of CPG recommendations, with a particular focus on leadership behaviors. Each dyad of managers was assigned to develop a leadership plan with specific goals and leadership behaviors for implementing three rehabilitation recommendations. Feasibility and usefulness were explored through observations and interviews with the managers and staff members prior to the intervention, and then one month and one year after the intervention. RESULTS: Managers considered the intervention beneficial, particularly the participation of both senior and frontline managers and the focus on leadership knowledge and skills for implementing CPG recommendations. All the managers developed a leadership plan, but only two units identified goals specific to implementing the three stroke rehabilitation recommendations. Of these, only one identified leadership behaviors that support implementation. CONCLUSION: Managers found that the intervention was delivered in a feasible way and appreciated the focus on leadership to facilitate implementation. However, the intervention appeared to have limited impact on managers' behaviors or clinical practice at the units. Future interventions directed towards managers should have a stronger focus on developing leadership skills and behaviors to tailor implementation plans and support implementation of CPG recommendations.

High-intensity resistance training in multiple sclerosis - An exploratory study of effects on immune markers in blood and cerebrospinal fluid, and on mood, fatigue, health-related quality of life, muscle strength, walking and cognition.

BACKGROUND: High-intensity resistance training is unexplored in people with multiple sclerosis. OBJECTIVES: To evaluate effects of high-intensity resistance training on immune markers and on measures of mood, fatigue, health-related quality of life, muscle strength, walking and cognition. Further, to describe participants' opinion and perceived changes of the training. METHODS: Twenty patients with relapsing-remitting multiple sclerosis performed high-intensity resistance training at an intensity of 80% of one-repetition maximum, twice a week for 12 weeks. Blood and optional cerebrospinal fluid samples, and data on secondary outcome measures were collected before and after intervention. A study-specific questionnaire was used for capturing participants' opinion. RESULTS: Seventeen participants completed the study. Plasma cytokine levels of tumor necrosis factor were significantly decreased post-intervention (p=0.001). Exploratory cytokine analyses in cerebrospinal fluid (n=8) did not reveal major changes. Significant and clinically important improvements were found in fatigue (p=0.001) and health-related quality of life (p=0.004). Measures of mood (p=0.002), muscle strength (p ≤ 0.001), walking speed (p=0.013) and cognition (p=0.04) were also improved. A majority of participants evaluated the training as very good and perceived changes to the better. CONCLUSION: High-intensity resistance training in persons with relapsing remitting multiple sclerosis with low disability had positive effects on peripheral pro-inflammatory cytokine levels, led to clinically relevant improvements in measures of fatigue and health-related quality of life, and was well tolerated. These results provide a basis for a larger randomized trial.

Assessing feasibility and acceptability of study procedures: getting ready for implementation of national stroke guidelines in out-patient health care.

BACKGROUND: Even though Swedish national guidelines for stroke care (SNGSC) have been accessible for nearly a decade access to stroke rehabilitation in out-patient health care vary considerably. In order to aid future interventions studies for implementation of SNGSC, this study assessed the feasibility and acceptability of study procedures including analysis of the context in out-patient health care settings. METHODS: The feasibility and acceptability of recruitment, observations and interviews with managers, staff and patients were assessed, as well as the feasibility of surveying health care records. RESULTS: To identify patients from the the hospitals was feasible but not from out-patient care where a need to relieve clinical staff of the recruitment process was identified. Assessing adherence to guidelines and standardized evaluations of patient outcomes through health care records was found to be feasible and suitable assessment tools to evaluate patient outcome were identified. Interviews were found to be a feasible and acceptable tool to survey the context of the health care setting. CONCLUSION: In this feasibility study a variety of qualitative and quantitative data collection procedures and measures were tested. The results indicate what can be used as a set of feasible and acceptable data collection procedures and suitable measures for studying implementation of stroke guidelines in an out-patient health care context.

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.

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.

A population-based study of fall risk factors among people with multiple sclerosis in Stockholm county.

OBJECTIVE: To identify factors associated with increased likelihood of reporting a recent fall among people with multiple sclerosis. This study was exploratory in its intent to examine sense of coherence as a contextual influence on fall risk. The study also sought to confirm that variables previously identified as fall risk factors for people with multiple sclerosis persist when tested in a population-based sample. DESIGN: The study was cross-sectional and data was obtained in the context of a population-based study of people with multiple sclerosis living in Stockholm. SUBJECTS: A total of 164 people with multiple sclerosis, age range 19-79 years. METHODS: Data were gathered through established instruments. Key instruments utilized included the sense of coherence scale, the Lindmark Motor Capacity Assessment's subscale for balance, and the 10-metre walking test. A logistic regression model examined factors associated with reporting a fall in the past 3 months. RESULTS: Of the participants, 62 (38%) reported experiencing at least one fall in the past 3 months. Reduced walking speed, impaired balance, and weak sense of coherence were associated with falls in the past 3 months. CONCLUSION: These findings underscore the importance of examining diverse and modifiable influences on fall risk, including walking speed, balance and sense of coherence, in future studies involving people with multiple sclerosis.

Differences between younger and older individuals in their use of care and rehabilitation but not in self-perceived global recovery 1year after stroke.

BACKGROUND: Although priorities in Swedish stroke care should be based on the ethical principles of equal care and greatest support to those in greatest need, being of working age (younger) or retired (older) might influence expectations on recovery and the provision of care and rehabilitation. METHOD: Information regarding the use of care and rehabilitation during the 1st year after stroke was retrieved from the Stockholm County Council database and the medical data was taken from the medical records. The Barthel Index was used for self-ratings of dependence pre-stroke, and the Stroke Impact Scale was used to assess self-perceived disability and a global rating of recovery at 12 months. One hundred and ninety-two individuals were included. RESULTS: Results showed that the younger group received more care and rehabilitation than the older group. In the older group, comorbid conditions and pre-stroke dependence, estimated in accordance with the Barthel Index, were more common. The older group reported larger impact on self-perceived disability regarding strength, mobility, self-care and domestic life, while self-perceived global recovery did not differ between the groups. CONCLUSION: Younger individuals received more care and rehabilitation, which indicates structural inequality in the provision of health care resources. However, as no difference in self-perceived global recovery was found between the groups; the disparity in the provision of health care may also be a consequence of greatest support being given to those in greatest need. By demonstrating the necessity of involving self-rated assessments of stroke impact at different points in time and in different age groups, the results of this study add to previous knowledge of age-related differences in the provision of health care and stroke outcome. Furthermore, this suggests a way to approach evaluation of equality in the provision of health care.

Residual disability 10 years after falling ill in Guillain-Barré syndrome: a prospective follow-up study.

OBJECTIVE: To describe residual disability 10years after onset of Guillain-Barré syndrome (GBS) and longitudinal changes from 2weeks after onset until 10years afterwards. The Erasmus GBS Outcome score (EGOS) was applied for predicting prognosis at 2 and 10years. METHODS: Twenty-nine patients, mean age at onset 49years, were followed prospectively from 2weeks to 10years after GBS onset. Measures included; GBS disability score, EGOS, Barthel Index, Frenchay Activity Index, Sickness Impact Profile (SIP), Overall Neuropathy Limitations Scale (ONLS), Walk-12, and Fatigue Severity Scale. RESULTS: At 10years, the facial paralysis found in 5 participants at 2years was still present, 11 participants (38%) experienced paresthesia, 6 (21%) had limitations in their arms, and 15 (52%) had limitations in walking. Decreased health-related quality of life on comparison to the general population was seen in the physical dimension of SIP at 10years. The median EGOS at 2weeks was 4.5, which correlated highly only with the Barthel Index at 2years and the ONLS arm scale at 10years. CONCLUSION: The residual disabilities at 1-2years comprised mainly of reduced walking ability, and are still persistent 10years after GBS onset. For some individuals, facial paralysis caused major disability. The EGOS only partly predicted residual disability at 2 and 10years after onset.

Shorter length of stay in the stroke unit: comparison between the 1990s and 2000s.

PURPOSE: The process ruling length of stay (LOS) in hospitals is complex, and changes over time in LOS have not been explored. The purpose of the study was to examine differences in LOS, use of and satisfaction with health-related services, and capacity in activities of daily living (ADLs) during the first year post stroke in 2 groups of patients with mild to moderate stroke who received care in the same stroke unit. METHOD: The patients (1993/96, n=40; 2006/07, n=43) in this study received care in the stroke unit at Karolinska University Hospital, Huddinge, Sweden. Data on LOS and on the use of health-related services were collected from the Stockholm County Council computerized registers. Satisfaction with health related services was assessed using a questionnaire covering different dimensions of care, while ADLs were assessed using Katz Extended Index of ADL. RESULTS: The LOS in the stroke unit was shorter in the 2006-2007 group (median 8 days) compared to the 1993-1996 group (13 days) (P < .001). Both groups were equally satisfied with health-related services received. A larger proportion of patients were independent in ADLs 3 months post stroke in the 2006-2007 group, but no difference was seen at 6 or 12 months post stroke. CONCLUSION: It seems possible to reduce the number of days spent in the stroke unit after mild to moderate stroke and instead spend days in a rehabilitation unit, and yet achieve similar patient satisfaction and faster recovery in ADL.

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.

Adult norms of the perceptual threshold of touch (PTT) in the hands and feet in relation to age, gender, and right and left side using transcutaneous electrical nerve stimulation.

There is a lack of standardized and quantifiable measures of touch function, for clinical work. Furthermore, it is not possible to make accurate diagnostic judgments of touch function before normative values are estimated. The objectives of this study were to establish adult norms of the perceptual threshold of touch (PTT) for the hands and feet according to age and gender and to determine the effect of right/left side, handedness, height, weight, and body mass index (BMI) on the PTT. The PTT was assessed by using a high-frequency transcutaneous electrical nerve stimulator (Hf/TENS) with self-adhesive skin electrodes in 346 adults. The PTT was identified as the level registered in mA at which the participants perceived a tingling sensation. The PTT for all participants was a median of 3.75 mA (range 2.50-7.25) in the hands and a median of 10.00 (range 5.00-30.00) in the feet. With increasing age an increase of the PTT was found. Men reported higher PTT than women. The right hand had higher PTT than the left. Handedness, height, weight, and BMI did not affect the PTT. Adult norms of the PTT in the hands for age, gender, and right/left side are presented for four age groups. The present study's estimate of the PTT in the hands could be used as adult norms. Adult norms for the feet could not be estimated because the PTT values in the feet showed a great variance.

Long-term health states relevant to young persons with stroke living in the community in southern Stockholm - a study of self-rated disability and predicting factors.

PURPOSE: The purpose was to explore self-rated long-term disability and to analyze whether initial stroke-related, personal and environmental factors can predict disability in a population-based sample of community-dwelling young (<65 years) persons suffering a stroke in 2000-2006. METHOD: Data on initial stroke-related, personal and environmental factors were retrieved from medical records. A study-specific posted questionnaire was used. RESULTS: Of the 158 young persons with stroke, 78% had suffered a mild stroke. Tiredness was the most commonly reported mental impairment (86%) followed by impaired memory (67%). A majority reported limitations/restrictions in returning to leisure activities (58%) and work (52%). Stroke-related, personal and environmental factors failed to predict self-reported mental and physical impairments, but predicted activity limitations/participation restrictions with an acceptable power of accuracy (0.70-0.73) but a low sensitivity (0.28-0.59). CONCLUSIONS: A majority of these young persons were diagnosed with a mild stroke but experienced long-term mental impairments and activity limitations/participation restrictions that could not be predicted by initial stroke-related, personal and environmental factors solely. Therefore, regular long-term assessments irrespective of initial stroke severity are warranted in order to identify disabilities and improve the state of health among young persons with stroke when needed.

Rivermead mobility index can be used to predict length of stay for elderly persons, 5 days after stroke onset.

BACKGROUND: Recovery after acute stroke is expected to continue for a long time but is most rapid during the first few days after onset. Because the cost of hospital care is rising constantly, there is increasing pressure from various administrative bodies to reduce the duration of hospital stay. To select the optimal level of care for elderly patients with stroke-related disability, it is important to be aware of adequate discharge destinations and to have reliable predictors for the length of institutional stay (LOS) (ie in hospital or nursing home). PURPOSE: The purpose of the study was to find feasible prognostic indicators for the LOS, to be used 5 days after acute stroke, in persons 65 years and older. METHODS: One hundred fifteen consecutive persons, 65 years and older, were assessed 5 days poststroke for the following: consciousness (Glasgow Coma Scale), language (aphasia/no aphasia), perceptual (Cancellation Tasks and Block Test), emotional (lability/no lability), energy and drive (Montgomery-Åsberg Depression Scale), mental (Mini-Mental State Examination), somatosensory (normal/impaired), and urinary (continent/incontinent) functions; mobility (Rivermead mobility index [RMI]); activities of daily living (Barthel Index); and side of hemiplegia or hemiparesis. In addition, previous living arrangements (alone vs with another person), stroke characteristics, and demographic information were documented. Length of institutional stay was recorded 5 days to 3 months poststroke onset. RESULTS: Multiple regression survival analyses showed that the factors with the greatest positive impact on short LOS, 5 days poststroke, were the following: no previous stroke; Glasgow Coma Scale ≥ 13 (mild brain injury); and RMI ≥ 4 points, corresponding to the ability to rise from a chair in less than 15 seconds and stand there for 15 seconds with or without an aid. CONCLUSIONS: In addition to medical appraisal, the RMI ≥ 4 points, a quickly performed test, can be used to predict short LOS for persons with stroke as early as 5 days after stroke onset.

Functioning and disability in adults with myotonic dystrophy type 1.

PURPOSE: To provide a comprehensive description of functioning and disability with regard to stages of disease progression in adults with myotonic dystrophy type 1 (DM1). Further to explore associations of measures of manual dexterity and of walking capacity with measures of activities of daily living (ADL) and participation in social and lifestyle activities. METHODS: Seventy persons with DM1 underwent examinations, tests and answered questionnaires. Stages of disease progression were based on the muscular impairment rating scale. RESULTS: Overweight, cardiac dysfunctions, respiratory restrictions, fatigue and/or low physical activity levels were found in approximately 40% of those with DM1. Over 75% had muscle impairments, and activity limitations in manual dexterity and walking. Dependence in personal and instrumental ADL was found in 16% and 39%, respectively, and participation restrictions in social and lifestyle activities in 52%. The presence of concurrent body-function impairments, activity limitations and participation restrictions was high. Significant differences were found in muscle impairment, manual dexterity, mobility, ADL and social and lifestyle activities with regard to disease progression. Cut-off values in measures of manual dexterity and walking capacity associated to functioning are proposed. CONCLUSION: This information can be used for developing clinical practise and for health promotion for persons with DM1.

Development, validity and reliability of a postal questionnaire assessing health states relevant to young persons with stroke in Sweden.

PURPOSE: The aim was to develop and test a postal questionnaire, the Swedish MYS questionnaire, for validity and reliability in order to survey health states relevant to young persons with stroke. METHOD: The questionnaire was designed with the International Classification of Functioning, Disability and Health as a frame and tested for content validity, face validity and readability by a group of experts including an occupational therapist, a physician, a physiotherapist, a psychologist, a speech and language therapist, a welfare officer and a selected sample of young persons with stroke (n = 15). To test the questionnaire for reliability in terms of stability a test-retest was performed on a selected sample of young persons (n = 20) with stroke. RESULTS: The questionnaire was found to be valid in terms of content validity, face validity and readability and finally consisted of 59 questions encompassing health states relevant to young persons with stroke. The questionnaire was stable in the test-retest (κ; 0.40-1.0) except for two questions and one alternative answer. CONCLUSION: The Swedish MYS questionnaire is a valid and reliable questionnaire that can be used in postal surveys of young persons with stroke except for two questions and one answering alternative, which need to be tested further.

Changes in perceived health between one and five years after stroke: a randomized controlled trial of early supported discharge with continued rehabilitation at home versus conventional rehabilitation.

BACKGROUND: Early supported discharge with continued rehabilitation at home (ESD) for patients with mild to moderate impairments has been compared to conventional rehabilitation in a randomized controlled trial. The aim of this study was to explore changes over time in perceived health status over the five years after stroke onset. METHODS: Of 83 patients enrolled in a randomized controlled trial of ESD compared to conventional rehabilitation, 50 (home rehabilitation group, n=28, conventional rehabilitation group, n=22) were followed up at one and five years after stroke with regard to perceived health using the Sickness Impact Profile. The Mann Whitney U-test was employed for statistical analysis of differences between the groups at one and five years, and the Wilcoxon sign test for differences within each group between one and five years. RESULTS: There was no difference in perceived health between the groups at one or five years after stroke with regard to SIP total and the physical and psychosocial dimensions. Perceived health did not change significantly between one and five years in the home rehabilitation group whereas it had deteriorated significantly in the conventional rehabilitation group (p=0.05). CONCLUSIONS: We conclude that the long term outcome with regard to perceived health status is more favourable after ESD than after conventional rehabilitation. Our results suggest that the environment is a key component to be considered in the rehabilitation process of stroke patients.

Limited fine hand use after stroke and its association with other disabilities.

OBJECTIVE: To describe the recovery of fine hand use and the associations between fine hand use and, respectively, somatosensory functions, grip strength, upper extremity movements and self-care, in the first week and at 3 and 18 months after stroke, and to describe whether these associations change over time. DESIGN: Prospective observational study. PATIENTS: Sixty-six consecutive patients with stroke. METHODS: The following parameters were assessed in the first week, and at 3 and 18 months after stroke: fine hand use, grip strength (not assessed in the first week), touch, proprioceptive and upper extremity movement functions; and self-care. RESULTS: Seventy percent of all patients had limited fine hand use in the first week, 41% at 3 months and 45% at 18 months after stroke. The associations between fine hand use and the other functioning were moderate to high, but decreased over time for fine hand use and, respectively, somatosensory functions, upper extremity movements and self-care. CONCLUSION: Limited fine hand use is common after acute stroke. Our results suggest that, with time after stroke, upper extremity movements and self-care become less dependent on fine hand use and fine hand use becomes less dependent on touch function, although no ultimate conclusions can be drawn on causality.