Quality of life in focal, segmental, and generalized dystonia

The objective of this study was to assess quality of life (QoL) in a community-based sample of people with various forms of dystonia and to identify the factors that predict QoL in dystonia. QoL was assessed using two generic questionnaires: the Medical Outcomes Study Short-Form 36 (SF36) and the EuroQol questionnaire. A host of demographic, clinical, and psychosocial variables were measured to identify the best predictors of QoL in dystonia. A comparison of EuroQol and SF36 scores with the norms for the general UK population of similar age showed that people with dystonia had scores indicative of worse QoL on all domains, particularly those related to physical and social functioning. The impairment of QoL was seen in all age groups and was similar for men and women. Compared to the focal dystonia group, participants with generalized dystonia scored significantly worse on all QoL measures. Participants who were unemployed also scored significantly worse. There was also a trend for younger and separated/divorced participants to score worse on QoL measures. A stepwise regression analysis revealed that functional disability, body concept, and depression were important predictors of QoL in dystonia. Dystonia influences various aspects of QoL, particularly those related to physical and social functioning. The impairment of QoL was greater for participants with generalized dystonia, those who were unemployed, younger, and separated/divorced. Functional disability, body concept, and depression were the best predictors of QoL in dystonia. Efforts to improve health care for people with dystonia should not only focus on management of the movement disorder but also consider modifying functional disability and negative body concept and depression that contribute to poor QoL in this disorder.