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Impact of dystonia on quality of life and health in a Swedish population
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
2009 (English)In: Acta Neurologica Scandinavica, ISSN 0001-6314, E-ISSN 1600-0404, Vol. 119, no 6, 376-382 p.Article in journal (Refereed) Published
Abstract [en]

Objectives –  Dystonia is often disabling and disfiguring. The aim of the study was to identify factors influencing the impact of dystonia on self-reported quality of life and health.

Material and methods –  Members of the Swedish Dystonia Patient Association participated in a survey covering demographic variables, satisfaction with treatment, physiotherapy and physical activity. Quality of life and health were assessed by the Craniocervical Dystonia Questionnaire and the Cervical Dystonia Impact Profile, respectively. Of 378 questionnaires, 76% were analysed. Multiple linear regression analyses were performed to evaluate associations of the above variables with quality of life and health.

Results –  Level of physical activity and satisfaction with treatment showed the highest association with quality of life and health. No significant relationship was found between form of dystonia and quality of life.

Conclusions –  The study indicates a need for health care professionals to encourage physical activity and to question dystonia patients about satisfaction with treatment. Further investigations with prospective controlled trials are necessary to evaluate the value of physiotherapy and physical activity in patients with dystonia.

Place, publisher, year, edition, pages
2009. Vol. 119, no 6, 376-382 p.
Keyword [en]
dystonia, healt, quality of life
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-97888DOI: 10.1111/j.1600-0404.2008.01111.xISI: 000266014600005OAI: oai:DiVA.org:uu-97888DiVA: diva2:172988
Available from: 2008-11-28 Created: 2008-11-28 Last updated: 2017-12-14Bibliographically approved
In thesis
1. Multidimensional Aspects of Dystonia: Description and Physiotherapy Management
Open this publication in new window or tab >>Multidimensional Aspects of Dystonia: Description and Physiotherapy Management
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aims: The overall aim of this research was to increase the knowledge about dystonia by identifying factors that influence self-reported quality of life and health in this disorder and to determine what factors predict disability. A further aim was to develop an objective outcome measure for quantifying the movement dysfunction in cervical dystonia (CD) and evaluate effects of physiotherapy.

Methods: A descriptive correlative design was adopted for study I (n=351), with a questionnaire covering physical activity, satisfaction with treatment, physiotherapy or not, and quality of life and health measured with the Craniocervical Dystonia Questionnaire (CDQ-24) and the Cervical Dystonia Impact Profile, respectively.

In study II a CD group (n=6) was compared with a control group (n=6). Head movements were measured with a motion capture system, and a Movement Energy Index (MEI) was calculated. In study III an experimental single-case design (n=6) was used, with continuous assessments during pre-treatment, intervention and follow-up. Quality of life, measured with CDQ-24, was the primary outcome measure.

A prospective correlative design was applied in study IV (n=179), where data from questionnaires were collected on inclusion and 2 months later. Independent variables were: duration of dystonia, severity of dystonia, pain intensity, catastrophizing, self-efficacy, fatigue, kinesiophobia, depression, anxiety and physical activity; and the dependent variables were the Neck Disability Index and the Functional Disability Questionnaire.

Results: Study I indicated that physical activity and satisfaction with treatment were associated with quality of life and health in dystonia. In study II the groups differed significantly concerning MEI in all movement directions. Mean MEI was significantly higher in patients than in controls. Positive treatment outcomes were reported by all patients in study III, mainly with reduced pain and reduced CD severity during the treatment period. Five of the six patients reported increased quality of life at the 6-month follow-up. Perceived self-efficacy, fatigue, pain intensity and anxiety contributed significantly to disability prediction in study IV.

Conclusion: These investigations have increased the knowledge of dystonia from a multidimensional perspective and the results could be valuable in developing new treatment strategies.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2008. 63 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 404
Keyword
disability, dystonia, health, movement analysis, physiotherapy, quality of life
National Category
Physiotherapy
Identifiers
urn:nbn:se:uu:diva-9417 (URN)978-91-554-7364-8 (ISBN)
Public defence
2008-12-19, IX, Universitetshuset, Övre Slottsgatan 2, Uppsala, 13:00
Opponent
Supervisors
Available from: 2008-11-28 Created: 2008-11-28Bibliographically approved

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Zetterberg, LenaAquilonius, Sten-MagnusLindmark, Birgitta

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