Impact of dystonia on quality of life and health in a Swedish population

Abstract

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.