The aim of this randomised controlled pilot study of a client-centred self-care intervention (CCSCI) in individuals with stroke was to study (i) the feasibility of the study design, (ii) effects up to 12 months on activities of daily living (ADL), use of informal care and home help services and the caregiver burden.
An intervention group (IG) received CCSCI and a control group (CG) received ordinary training. Forty individuals with stroke (IG n = 19, CG n = 21) were included. Data were collected at 3, 6 and 12 months using established instruments.
After 12 months 24 people remained in the study (IG = 10, CG = 14). The data collection method was acceptable to most participants. At 12 months there were no differences in ADL, use of services or caregiver's burden. Both groups improved significantly and clinically important improvements were achieved by 80% in the IG and 71% in the CG.
The results should be interpreted with caution because of the small sample size and the large proportion of dropouts. However, the CCSCI appears promising as a way of recapturing self-care after stroke and a large randomised controlled trial is warranted, in which the present design and methods will be suitable with some modification.
Disability/problems, one phenomenon underlying people's need for health care services, can be viewed both from the perspectives of people with stroke (felt problems), and the health professionals (assessed problems).
The aim was to describe felt problems three months after stroke and to explore the concurrence between felt problems and assessed problems.
The patients (n=203) received care in the stroke units at Karolinska University Hospital, Sweden. Felt problems, drawn from an open question, were categorized. Results from established assessment tools: Katz Extended Index of ADL (KI); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories of felt problems were identified and comparisons performed.
The category Fatigue had the largest number of felt problems (n=58, 28%). Fourteen out of the 24 categories of felt problems had corresponding items/domains in the assessment tools. KE/BI failed to identify 16-57% and SIS 0-33% of the felt problems.
There was a substantial lack of concurrence between felt and assessed problems. The results indicate that the use of standardized instruments should be complemented by a dialog if health services are to be based on problems experienced by the patients.
People who have suffered a stroke commonly report unfulfilled need for rehabilitation. Using a model of patient satisfaction, we examined characteristics in individuals that at 3 months after stroke predicted, or at 12 months were associated with unmet need for rehabilitation or dissatisfaction with health care services at 12 months after stroke.
The participants (n?=?175) received care at the stroke units at the Karolinska University Hospital, Sweden. The dependent variables "unfulfilled needs for rehabilitation" and "dissatisfaction with care" were collected using a questionnaire. Stroke severity, domains of the Stroke Impact Scale (SIS), the Sense of Coherence scale (SOC) and socio demographic factors were used as independent variables in four logistic regression analyses.
Unfulfilled needs for rehabilitation at 12 months were predicted by strength (SIS) (odds ratio (OR) 7.05) at three months, and associated with hand function (SIS) (OR 4.38) and poor self-rated recovery (SIS) (OR 2.46) at 12 months. Dissatisfaction with care was predicted by SOC (OR 4.18) and participation (SIS) (OR 3.78), and associated with SOC (OR 3.63) and strength (SIS) (OR 3.08).
Thirty-three percent of the participants reported unmet needs for rehabilitation and fourteen percent were dissatisfied with the care received. In order to attend to rehabilitation needs when they arise, rehabilitation services may need to be more flexible in terms of when rehabilitation is provided. Long term services with scheduled re-assessments and with more emphasis on understanding the experiences of both the patients and their social networks might better be able to provide services that attend to patients' needs and aid peoples' reorientation; this would apply particularly to those with poor coping capacity.
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Cites: Disabil Rehabil. 2005 Oct 30;27(20):1213-2316298923
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.
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.
A total of 164 people with multiple sclerosis, age range 19-79 years.
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.
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.
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.
The purpose of this study was to identify how people 6-12 months after stroke were using and integrating information and communication technology (ICT) in their everyday lives.
To capture the participants' experiences, one focus group and 14 individual interviews were carried out in Sweden and Denmark regarding the use of ICT in everyday life. The participants comprised 11 men and seven women aged 41-79 years. A grounded theory approach was used throughout the study and a constant comparative method was used in the analysis.
Five categories were identified from the analysis of the interviews with the participants: 1) Using the mobile phone to feel safe, 2) Staying connected with others, 3) Recreating everyday life, 4) A tool for managing everyday life, and 5) Overcoming obstacles for using ICT. From these categories one core category emerged: The drive to integrate ICT in everyday life after stroke.
People with stroke had a strong drive to integrate ICT in order to manage and bring meaning to their everyday lives, although sometimes they needed support and adaptations. It is not only possible but also necessary to start using ICT in rehabilitation in order to support people's recovery and promote participation in everyday life after stroke. Implications for rehabilitation People with stroke have a strong drive for using information and communication technology in their everyday lives, although support and adaptations are needed. The recovery process of people with stroke could benefit from the use of ICT in the rehabilitation and ICT could possibly contribute to independence and promote participation in everyday life. Knowledge from this study can be used in the development of an ICT-based stroke rehabilitation model.
To a large extent, people who have suffered a stroke report unmet needs for rehabilitation. The purpose of this study was to explore aspects of rehabilitation provision that potentially contribute to self-reported met needs for rehabilitation 12 months after stroke with consideration also to severity of stroke.
The participants (n = 173) received care at the stroke units at the Karolinska University Hospital, Sweden. Using a questionnaire, the dependent variable, self-reported met needs for rehabilitation, was collected at 12 months after stroke. The independent variables were four aspects of rehabilitation provision based on data retrieved from registers and structured according to four aspects: amount of rehabilitation, service level (day care rehabilitation, primary care rehabilitation and home-based rehabilitation), operator level (physiotherapist, occupational therapist, speech therapist) and time after stroke onset. Multivariate logistic regression analyses regarding the aspects of rehabilitation were performed for the participants who were divided into three groups based on stroke severity at onset.
Participants with moderate/severe stroke who had seen a physiotherapist at least once during each of the 1st, 2nd and 3rd-4th quarters of the first year (OR 8.36, CI 1.40-49.88 P = 0.020) were more likely to report met rehabilitation needs.
For people with moderate/severe stroke, continuity in rehabilitation (preferably physiotherapy) during the first year after stroke seems to be associated with self-reported met needs for rehabilitation.
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.
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.
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
A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: changes in health-related quality of life and the value of different factors in predicting health-related quality of life.
Health-related quality of life (HRQL) in people with multiple sclerosis (PwMS) is negatively affected compared to that of the general population. Cognitive impairment and depressive symptoms have been shown to predict worse HRQL in a short-term perspective. Considering the progressive nature of MS, it is essential to include the long-term (10 years) perspective of HRQL in PwMS.
The aim of this 10-year follow-up of a population-based sample of PwMS was to explore changes in and the predictive value of personal factors, degree of MS disability, depressive symptoms and cognitive impairment on HRQL.
Data on personal and disease-specific factors, mood, and cognitive function was collected. Data on HRQL was collected, seen as a health profile with the Sickness Impact Profile, as a health index with the EuroQol 5D and as a single global question with the EQ Visual Analog Scale.
HRQL worsened over 10 years according to the health profile (Sickness Impact Profile Total and its physical dimension) and according to the health index. The effect sizes were small. HRQL assessed with the single global question remained unchanged. Depressive symptoms and cognitive impairment predicted worse HRQL.
In a 10-year perspective the HRQL with regard to its physical domain or when seen as a total health profile tends to get worse in PwMS. Yet, HRQL with regard to its psychosocial domain and with regard to PwMS' self-rated health, remains stable. There is a potential for health-care professionals to decrease the impact of modifiable factors on HRQL in PwMS by identifying those with depressive symptoms and/or cognitive impairment and initiating evidence-based treatment as well as meeting the need for environmental facilitators aiming at reducing disability.
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.
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.
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.
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.
Longitudinal changes in sickness absence and disability pension, and associations between disability pension and disease-specific and contextual factors and functioning, in people with multiple sclerosis.
Even though it is well known that disability due to MS is highly associated with employment status, the long-term longitudinal perspective on sickness absence and disability pension over the MS trajectory is lacking. In addition, further knowledge of risk factors for future disability pension is needed.
To explore long-term longitudinal changes in the prevalence of sickness absence and disability pension in people with MS (PwMS), as well as to explore associations between disease-specific factors, contextual factors and functioning, and the outcome of future full-time disability pension.
A prospective, population-based survival cohort study, with a nine year follow-up, including 114 PwMS was conducted by combining face-to-face collected data and register-based data.
The prevalence of full-time disability pension increased from 20% to 50%, however 24% of the PwMS had no disability pension at all at end of follow-up. Sex, age, disease severity and impaired manual dexterity were associated with future full-time disability pension.
The large increase in prevalence of PwMS on full-time disability pension during the MS trajectory, calls for the development and implementation of evidence-based interventions, aiming at keeping PwMS in the work force. Modifiable factors, such as manual dexterity should be targeted in such interventions.