| 1. |
- 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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| 2. |
- 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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| 3. |
- 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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| 4. |
- 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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