| 1. |
- Algurén, Beatrix
(författare)
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Functioning after stroke : An application of the International Classification of Functioning,Disability and Health (ICF)
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Objective. The overall aim of this thesis was to evaluate the biopsychosocial consequences after stroke and test the validity of the ICF Core Sets for Stroke during one year post-stroke. Material and Methods. Studies I, II and III were based on data from a prospective cohort study with 120 stroke survivors who were recruited at admission to stroke units in western Sweden and were followed-up at six weeks, three months and one year after stroke event. Repeated assessments were done through face-to-face interviews consisting of a battery of questions based on the Stroke ICF Core Set (59 categories of Body Functions, 59 of Activities and Participation and 37 of Environmental Factors) and several questionnaires (EuroQol-5D (EQ-5D), Stroke Impact Scale (SIS), Medical Outcome Study Short Form 36 (SF-36), Self administered Comorbidity Questionnaire (SCQ), information on health care and social services utilization and spouse support). Study IV was based on data from the multi-center cross-sectional validation study of the Stroke ICF Core Set with 757 stroke survivors from China, Germany, Italy and Sweden. Results. Study I: A total of 28 of 59 ICF categories of Body Functions and a total of 41 of 59 categories of Activities and Participation were significant problems for stroke survivors at six weeks and three months. These categories showed a good discriminative ability to distinguish between independent (≤ 2 on modified Ranking Scale (mRS)) and dependent (> 2 on mRS) stroke survivors. Study II: Most stroke survivors felt satisfied with their stroke care and rehabilitation during three months post-stroke. Frequently perceived environmental facilitators could be documented with eleven of 37 ICF categories of Environmental Factors. Only physical geography, such as hills, was a common perceived barrier. Study III: Independent factors of health-related quality of life (HRQoL) varied over time. Almost all variance in HRQoL was explained by categories within Body Functions and within Activities and Participation during the first three months, while at one year only half of the variance could be explained by categories within either Body Functions or Environmental Factors. Problems with personal and energy functions, as well as limited recreational activities, were recurringly associated with poorer HRQoL. Study IV: It was possible to integrate ICF categories of Body Functions and Structures, Activities and Participation into a cross-cultural measurement with good reliability providing summary scores of the overall functioning of stroke survivors. However, the five-point ICF qualifier scale was not consistently applicable. Conclusions. The results of the present thesis showed that the ICF,particularly the ICF Core Set for Stroke, was a valid and practical tool for documenting the multi-faceted biopsychosocial problems and consequences after stroke structured with one common terminology throughout the long chain of care and rehabilitation. The opportunity to integrate ICF categories of Body Functions and Structures, Activities and Participation into a measurement provides new possibilities for monitoring, following-up and comparing overall functioning after stroke.
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| 2. |
- Chruzander, Charlotte, et al.
(författare)
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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.
- 2016
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Ingår i: Journal of the Neurological Sciences. - : Elsevier BV. - 0022-510X .- 1878-5883. ; 367, s. 319-325
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: 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.OBJECTIVES: 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.METHODS: 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.RESULTS: 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.CONCLUSIONS: 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.
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| 3. |
- Forsberg, Anette, 1965-, et al.
(författare)
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Balancing everyday life two years after falling ill with Guillain-Barre syndrome : a qualitative study
- 2015
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Ingår i: Clinical Rehabilitation. - London, United Kingdom : Sage Publications. - 0269-2155 .- 1477-0873. ; 29:6, s. 601-610
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim was to describe experiences of disability in everyday life and managing the recovery process two years after falling ill with Guillain-Barré syndrome.Design: Qualitative interview study.Methods: Interviews were conducted with 35 persons (22 male, mean age 50 years) two years after the onset of Guillain-Barré syndrome. The interviews were transcribed verbatim and analysed using content analysis.Results: The analysis revealed four categories and an overall theme: ‘Striving for balance in everyday life’. The participants described persistent lived body restrictions that affected their arms, legs, and face. Bodily symptoms and loss of energy limited or restricted many everyday activities. In connection with healthcare, both satisfaction and feeling vulnerable in a critical situation were described. Experiences of the recovery process varied. The participants described acceptance and reappraisal of a new life situation despite their limitations, and having gained the knowledge that life can change suddenly. However, they also expressed disappointment following an overly positive prognosis in the early stages, and over a continuous wait for recovery. For some participants life had returned to as before.Conclusion: The participants experienced limitations in everyday life and decreased functioning in several parts of the body. The recovery process may still be ongoing two years after onset. Rehabilitation intervention with an extended focus on supporting individualized coping processes could facilitate ways to live with persistent disability.
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| 4. |
- Forsberg, Anette, 1965-, et al.
(författare)
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Disability and health-rated quality of life in Guillain-Barré syndrome during the first two years after onset : a prospective study
- 2005
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Ingår i: Clinical Rehabilitation. - : SAGE Publications. - 0269-2155 .- 1477-0873. ; 19:8, s. 900-909
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To describe changes in disability and health-related quality of life in patients with Guillain-Barré syndrome in Sweden during the first two years after onset.SUBJECTS: Forty-four patients were recruited from eight different hospitals, and 42 of them (mean age 52 years) were followed for two years. Evaluations were performed, primarily as home visits, at two weeks, two months, six months, one year and two years after onset.MAIN MEASURES: Disability was measured using the Katz Personal and Extended Activities of Daily Living Indexes, the Barthel Index, the Frenchay Activity Index and assessments of work capacity; health-related quality of life using the Sickness impact Profile.RESULTS: At two weeks, one year and two years after onset of Guillain-Barré syndrome, 76%, 14% and 12% of patients were dependent in personal activities of daily life (ADL); and 98%, 28% and 26% were dependent in instrumental ADL. At two weeks, all of the patients that were working before onset were unable to work owing to Guillain-Barré syndrome; at two years, 17% were unable to work. At two weeks, scores on Sickness Impact Profile were elevated in all dimensions; at two years, they remained elevated in the physical dimension and in the categories home management, work and recreation and pastimes.CONCLUSIONS: The impact of Guillain-Barré syndrome on ADL, work, social activities and health-related quality is considerable two years after onset and presumably persists beyond this time point.
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| 5. |
- Forsberg, Anette, et al.
(författare)
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Falling ill with Guillain-Barré syndrome : patients' experiences during the initial phase.
- 2008
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 22:2, s. 220-226
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Research describing the personal experiences of Guillain-Barré syndrome (GBS) is limited, but is important for identifying the patients' need of support. The aim of this study was to describe experiences of falling ill with GBS, with the focus on the onset of disease, the diagnosis and the illness progress during hospital care. METHODS: The study included 35 persons, 20-78 years old. They were interviewed 2 years after the onset of GBS. The interviews were analysed using qualitative content analysis. RESULTS: The onset was described as either an incomprehensible, prolonged, increasing deterioration with puzzling sensations or as a frightening, rapid onset with a sudden loss of body control. The majority of the persons relied heavily on the reassurance of a positive prognosis, and expressed immense confidence in being able to recover. During the early phase at the hospital, a rapid and steady course of improvement inspired hope in many persons. In contrast, even in this early phase of hospital care some individuals expressed doubts of a slow recovery. Feelings of fear and insecurity were evident when losing body functions, thus causing helplessness. Sensations of pain, numbness and lost body image increased their vulnerability. Half of the ventilator-treated persons expressed vivid memories of scary hallucinations. CONCLUSION: The onset is characterized by an incomprehensible bodily deterioration or a frightening, rapid paralysis. In the initial phase, there is hope for recovery, which for many individuals is reinforced by a steady recovery. In contrast, early psychosocial support may be necessary for some persons with an alarmingly slow recovery.
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| 6. |
- Forsberg, Anette, 1965-, et al.
(författare)
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Impairment in Guillain-Barré syndrome during the first 2 years after onset : A prospective study
- 2004
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Ingår i: Journal of the Neurological Sciences. - : Elsevier BV. - 0022-510X .- 1878-5883. ; 227:1, s. 131-138
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Tidskriftsartikel (refereegranskat)abstract
- ObjectivesTo provide a comprehensive description of impairment in patients with Guillain–Barré syndrome (GBS) in Sweden during the first 2 years after disease onset.MethodsIn this prospective multi-centre study, 42 patients, mean age 52 years, were evaluated at 2 weeks, 2 months, 6 months, 1 year and 2 years. Evaluations made use of validated, reliable measures of muscle strength, grip strength, finger dexterity, balance, facial-muscle function, respiratory function, gait, motor performance and sensory examination, and included patients' owns assessments of pain, fatigue and paraesthesia.ResultsMechanical ventilation was required in 21% of patients. At 2 weeks, 1 year and 2 years after GBS onset: 100%, 62% and 55% of patients had submaximal overall muscle strength; 98%, 38% and 31% subnormal grip strength; and 38%, 14% and 12% affected facial-muscle function. At the same time points, 62%, 10% and 7% of patients were unable to walk 10 m independently; and affected sensation was detected in 93%, 55% and 52%.ConclusionsRecovery occurred mainly during the first year after onset. At 2 years, motor impairment and sensory impairment were each still detectable in more than 50% of patients. We conclude that residual impairment is significant, somatically widespread and, likely, persistent.
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| 7. |
- Forsberg, Anette, 1965-, et al.
(författare)
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Residual disability 10 years after falling ill in Guillain-Barré syndrome : a prospective follow-up study
- 2012
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Ingår i: Journal of the Neurological Sciences. - Amsterdam, Netherlands : Elsevier. - 0022-510X .- 1878-5883. ; 317:1-2, s. 74-79
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
- Forsberg, Anette, 1965-, et al.
(författare)
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Use of health-care, patient satisfaction and burden of care in Guillain-Barré syndrome
- 2006
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Ingår i: Journal of Rehabilitation Medicine. - : Medical Journals Sweden AB. - 1650-1977 .- 1651-2081. ; 38:4, s. 230-236
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The aim of this study was to investigate, in an unselected sample of patients with Guillain-Barré syndrome in Sweden, the utilization of healthcare resources, satisfaction with these resources, informal help and the burden of care on family caregivers during the first 2 years after onset.SUBJECTS: Forty-four patients were enrolled from 8 hospitals, and 42 of them were followed for 2 years.METHODS: Data on the utilization of hospital inpatient and outpatient care, primary care and community-based services were collected via computerized registry information, medical records and a specific protocol. Patient satisfaction and the burden on family caregivers were studied using questionnaires.RESULTS: Forty-one patients required inpatient hospitalization for a mean of 82 days. Patients with persistent dependency during activities of daily living had significantly longer hospital stays and more days of outpatient rehabilitation. The majority of patients were satisfied with their care, but dissatisfaction was found regarding information and finances. At 2 years after onset, 26% of patients still depended on informal help. The spouses expressed increased concern and responsibility for household and family.CONCLUSION: Patients with persistent disability due to Guillain-Barré syndrome were found to have long-term need for services from the healthcare system and informal help.
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| 9. |
- Hammer, Ann M., 1957-
(författare)
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Forced use on arm function after stroke : clinically rated and self-reported outcome and measurement during the sub-acute phase
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim was to evaluate the effectiveness of forced use on arm and hand recovery after stroke by applying a restraining sling on the non-affected arm and to investigate psychometric properties of selected upper limb measures.Papers I and II reported a randomised trial with 1- and 3-month follow-ups. Thirty patients 1 to 6 months after stroke were included and received regular training for 2 weeks of intervention. The forced-use group had in addition a restraining sling on the non-paretic arm. Outcome measures were the Fugl-Meyer Assessment, the Modified Ashworth scale, the 16-hole peg test, grip force, the Action Research Arm test, and the Motor Assessment Scale (Paper I), and the Motor Activity Log (MAL) (Paper II). Results in Papers I and II showed no statistical difference in change between groups. Both groups improved over time.Paper III assessed the responsiveness of the MAL and its cross-sectional and longitudinal validity. The MAL was responsive to change, with Standardised Response Means and Responsiveness Ratios larger than 1.0. Correlations between the MAL and the other measures were mostly close to 0.50.Paper IV investigated test–retest intra-rater reliability of measuring grip force with Grippit, and assessed relationships between grip forces of both hands, and between sustained and peak grip force. The paretic hand needs to score a change of 10% or 50 N to exceed the measurement error. The mean ratio between sides was 0.66, and between sustained and peak grip force, 0.80–0.84.In conclusion, this thesis provides preliminary evidence that forced use does not generate greater improvement on upper limb motor impairment, capacity, and performance of activity than regular rehabilitation. The findings indicate that the MAL is a responsive measure of daily hand use in patients with stroke. Correlations of construct validity indicated that daily hand use might need to be measured separately from body function and activity capacity. The coefficients calculated for repeatability and reproducibility were acceptable, and the Grippit instrument can be recommended.
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| 10. |
- Johansson, Sverker, et al.
(författare)
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The Swedish occupational fatigue inventory in people with multiple sclerosis
- 2008
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Ingår i: Journal of Rehabilitation Medicine. - Oslo : Taylor & Francis. - 1650-1977 .- 1651-2081. ; 40:9, s. 737-743
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate the applicability of the Swedish Occupational Fatigue Inventory and its ability to identify different dimensions of fatigue in people with multiple sclerosis with varying, degrees of disease severity, and the correlation of each of its 5 dimensions with the Fatigue Severity Scale.Design: An observational. prospective study.Subjects: Two hundred and nineteen outpatients: 59.5% had mild. 170%, moderate and 23.5% severe disease severity; 83%, received immunomodulatory treatment.Methods: Both questionnaires were administered at inclusion, and at 12 and 24 months. Analyses of internal consistency. item-total correlation, factor analysis and tests of correlations were performed.Results: The instrument was completed by 97% of subjects. Internal consistency was satisfactory in the dimensions Lack of energy, Lack of motivation and Sleepiness, but not in Physical exertion and Physical discomfort. Factor analysis revealed that all but 3 items (2 in Physical exertion, 1 in Physical discomfort) loaded satisfactorily in 5 dimensions. Correlations between the dimensions and the Fatigue Severity Scale were low, except for a moderate correlation found for Lack of energy.Conclusion: The dimensions Lack of energy, Lack of motivation and Sleepiness appear applicable for use in people with multiple sclerosis. Further development of the physical dimensions and studies on the instrument's capacity to measure changes are needed.
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