Masahiro Horiuchi, Shuichi Kawashima, Kazutaka Mochizuki and Taku Satoh
Background: Dystonia is a condition that can affect quality of life and lead to employment and financial difficulties. We evaluated the adverse effects of dystonia on daily life and the cost involved in treatment.
Methods and findings: We conducted a postal mail questionnaire survey of 226 patients with various types of dystonia who were members of the Dystonia Friends Association, a Japanese nonprofit organization. Many individuals suffered economic and employment problems (30%) and pain (21%) because of dystonia. They urged that social security and the medical system be improved (16%).
Conclusions: Patients reported regularly experiencing inconvenience in daily life for economic, employment, and pain reasons. Improving the quality of life of patients with dystonia by reducing these burdens is a key aspect in its clinical management.