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A randomised controlled trial of a client-centred self-care intervention after stroke: a longitudinal pilot study.

https://arctichealth.org/en/permalink/ahliterature142443
Source
Disabil Rehabil. 2011;33(6):494-503
Publication Type
Article
Date
2011
Author
Susanne Guidetti
Charlotte Ytterberg
Author Affiliation
Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden. susanne.guidetti@ki.se
Source
Disabil Rehabil. 2011;33(6):494-503
Date
2011
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Aged
Case-Control Studies
Chi-Square Distribution
Disability Evaluation
Feasibility Studies
Female
Humans
Incidence
Intervention Studies
Interviews as Topic
Longitudinal Studies
Male
Occupational therapy
Pilot Projects
Questionnaires
Self Care
Statistics, nonparametric
Stroke - epidemiology - rehabilitation
Sweden - epidemiology
Treatment Outcome
Abstract
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.
PubMed ID
20597629 View in PubMed
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Poor concurrence between disabilities as described by patients and established assessment tools three months after stroke: a mixed methods approach.

https://arctichealth.org/en/permalink/ahliterature131106
Source
J Neurol Sci. 2012 Feb 15;313(1-2):160-6
Publication Type
Article
Date
Feb-15-2012
Author
Malin Tistad
Charlotte Ytterberg
Kerstin Tham
Lena von Koch
Author Affiliation
Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Fack 23 200, 141 83 Huddinge, Sweden. malin.tistad@ki.se
Source
J Neurol Sci. 2012 Feb 15;313(1-2):160-6
Date
Feb-15-2012
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Disabled Persons
Fatigue - diagnosis - epidemiology - physiopathology
Female
Humans
Male
Middle Aged
Neurologic Examination - methods - standards
Outcome Assessment (Health Care) - methods - standards
Prospective Studies
Questionnaires - standards
Stroke - diagnosis - epidemiology - physiopathology
Sweden - epidemiology
Time Factors
Young Adult
Abstract
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.
PubMed ID
21937062 View in PubMed
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Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke: an explorative observational study.

https://arctichealth.org/en/permalink/ahliterature123349
Source
BMC Neurol. 2012;12:40
Publication Type
Article
Date
2012
Author
Malin Tistad
Kerstin Tham
Lena von Koch
Charlotte Ytterberg
Author Affiliation
Division of Occupational Therapy, Department of Neurobiology Care Sciences and Society, Karolinska Institutet, Fack 23 200, S 141 83, Huddinge, Sweden. malin.tistad@ki.se
Source
BMC Neurol. 2012;12:40
Date
2012
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Adult
Aged
Aged, 80 and over
Female
Humans
Male
Middle Aged
Needs Assessment
Patient Satisfaction - statistics & numerical data
Prevalence
Stroke - epidemiology - rehabilitation
Sweden - epidemiology
Treatment Failure
Abstract
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.
Notes
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PubMed ID
22708545 View in PubMed
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A population-based study of fall risk factors among people with multiple sclerosis in Stockholm county.

https://arctichealth.org/en/permalink/ahliterature115150
Source
J Rehabil Med. 2013 May;45(5):452-7
Publication Type
Article
Date
May-2013
Author
Charlotte Ytterberg
Ulrika Einarsson
Lotta Widén Holmqvist
Elizabeth Walker Peterson
Author Affiliation
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Karolinska University Hospital, Huddinge, Stockholm, Sweden. charlotte.ytterberg@ki.se
Source
J Rehabil Med. 2013 May;45(5):452-7
Date
May-2013
Language
English
Publication Type
Article
Keywords
Accidental Falls - statistics & numerical data
Adult
Aged
Cross-Sectional Studies
Female
Humans
Male
Middle Aged
Multiple Sclerosis - epidemiology - psychology
Risk factors
Sense of Coherence
Sweden
Abstract
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.
PubMed ID
23538713 View in PubMed
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Experiences of using information and communication technology within the first year after stroke - a grounded theory study.

https://arctichealth.org/en/permalink/ahliterature295335
Source
Disabil Rehabil. 2018 Mar; 40(5):561-568
Publication Type
Journal Article
Date
Mar-2018
Author
Martha Gustavsson
Charlotte Ytterberg
Mille Nabsen Marwaa
Kerstin Tham
Susanne Guidetti
Author Affiliation
a Department of Neurobiology, Care Sciences and Society , Karolinska Institutet , Huddinge , Sweden.
Source
Disabil Rehabil. 2018 Mar; 40(5):561-568
Date
Mar-2018
Language
English
Publication Type
Journal Article
Keywords
Adult
Aged
Attitude to Computers
Denmark
Female
Focus Groups
Grounded Theory
Humans
Interpersonal Relations
Interviews as Topic
Male
Middle Aged
Mobile Applications
Safety
Smartphone
Stroke - psychology
Stroke rehabilitation
Sweden
Abstract
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.
PubMed ID
27976926 View in PubMed
Less detail

What aspects of rehabilitation provision contribute to self-reported met needs for rehabilitation one year after stroke--amount, place, operator or timing?

https://arctichealth.org/en/permalink/ahliterature112811
Source
Health Expect. 2013 Sep;16(3):e24-35
Publication Type
Article
Date
Sep-2013
Author
Malin Tistad
Lena von Koch
Christina Sjöstrand
Kerstin Tham
Charlotte Ytterberg
Author Affiliation
Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden. malin.tistad@ki.se
Source
Health Expect. 2013 Sep;16(3):e24-35
Date
Sep-2013
Language
English
Publication Type
Article
Keywords
Aged
Female
Humans
Male
Middle Aged
Patient Satisfaction - statistics & numerical data
Prospective Studies
Rehabilitation Centers - organization & administration - standards - statistics & numerical data
Stroke - psychology - rehabilitation
Sweden
Time Factors
Abstract
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.
Notes
Cites: Stroke. 2009 Jul;40(7):2450-919461035
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Cites: J Rehabil Med. 2012 Jan;44(1):36-4222234319
Cites: Chronic Illn. 2012 Mar;8(1):31-4422025770
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Cites: Top Stroke Rehabil. 2012 May-Jun;19(3):244-5522668679
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Cites: Qual Health Care. 1999 Mar;8(1):30-510557667
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PubMed ID
23796012 View in PubMed
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Shorter length of stay in the stroke unit: comparison between the 1990s and 2000s.

https://arctichealth.org/en/permalink/ahliterature125958
Source
Top Stroke Rehabil. 2012 Mar-Apr;19(2):172-81
Publication Type
Article
Author
Malin Tistad
Charlotte Ytterberg
Christina Sjöstrand
Lotta Widén Holmqvist
Lena von Koch
Author Affiliation
Department of Neurobiology, Karolinska Institutet, Stockholm, Sweden.
Source
Top Stroke Rehabil. 2012 Mar-Apr;19(2):172-81
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Adult
Aged
Aged, 80 and over
Female
Hospitals, University - statistics & numerical data - trends
Humans
Length of Stay - statistics & numerical data - trends
Male
Middle Aged
Outcome Assessment (Health Care) - statistics & numerical data
Patient Satisfaction - statistics & numerical data
Stroke - epidemiology - rehabilitation
Sweden - epidemiology
Abstract
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
PubMed ID
22436365 View in PubMed
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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.

https://arctichealth.org/en/permalink/ahliterature259017
Source
J Neurol Sci. 2014 Apr 15;339(1-2):57-63
Publication Type
Article
Date
Apr-15-2014
Author
Charlotte Chruzander
Charlotte Ytterberg
Kristina Gottberg
Ulrika Einarsson
Lotta Widén Holmqvist
Sverker Johansson
Source
J Neurol Sci. 2014 Apr 15;339(1-2):57-63
Date
Apr-15-2014
Language
English
Publication Type
Article
Keywords
Adult
Female
Follow-Up Studies
Health status
Humans
Longitudinal Studies
Male
Middle Aged
Multiple Sclerosis - diagnosis - epidemiology - psychology
Population Surveillance - methods
Predictive value of tests
Quality of Life - psychology
Sweden - epidemiology
Abstract
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.
PubMed ID
24492009 View in PubMed
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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.

https://arctichealth.org/en/permalink/ahliterature275585
Source
BMC Health Serv Res. 2015;15:480
Publication Type
Article
Date
2015
Author
Charlotte Chruzander
Sverker Johansson
Kristina Gottberg
Ulrika Einarsson
Jan Hillert
Lotta Widén Holmqvist
Charlotte Ytterberg
Source
BMC Health Serv Res. 2015;15:480
Date
2015
Language
English
Publication Type
Article
Keywords
Ambulatory Care - utilization
Disabled Persons - psychology - statistics & numerical data
Epidemiologic Methods
Female
Hospitalization - statistics & numerical data
Humans
Male
Middle Aged
Multiple Sclerosis - epidemiology - psychology - therapy
Patient Acceptance of Health Care - psychology
Patient Satisfaction - statistics & numerical data
Primary Health Care - utilization
Sweden - epidemiology
Abstract
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.
Notes
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PubMed ID
26499940 View in PubMed
Less detail

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.

https://arctichealth.org/en/permalink/ahliterature282657
Source
J Neurol Sci. 2016 Aug 15;367:319-25
Publication Type
Article
Date
Aug-15-2016
Author
Charlotte Chruzander
Petter Tinghög
Charlotte Ytterberg
Lotta Widén Holmqvist
Kristina Alexanderson
Jan Hillert
Sverker Johansson
Source
J Neurol Sci. 2016 Aug 15;367:319-25
Date
Aug-15-2016
Language
English
Publication Type
Article
Keywords
Disability Evaluation
Disabled persons - statistics & numerical data
Employment - statistics & numerical data
Female
Follow-Up Studies
Humans
Longitudinal Studies
Male
Middle Aged
Multiple Sclerosis - drug therapy - economics - epidemiology - psychology
Pensions - statistics & numerical data
Prevalence
Proportional Hazards Models
Prospective Studies
Registries
Severity of Illness Index
Sweden - epidemiology
Abstract
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.
PubMed ID
27423611 View in PubMed
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