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.