In this study 180 members of the German Dystonia Society completed a survey on their utilization and costs of complementary and alternative medicine (CAM) for their condition. In total, 131 dystonia patients (73%) were current or former users of CAM, 55 patients used CAM in addition to botulinum toxin A injections and 86 patients had experience with three or more CAM methods. The options used most widely were acupuncture (56%), relaxation techniques (44%), homeopathy (27%) and massages (26%).
Among users of specific CAM methods, breathing therapy, Feldenkrais, massages, and relaxation techniques were perceived as most effective. On average, patients spent 1,513 euros on CAM without reimbursement. There was no correlation between costs and perceived effectiveness of different methods.
The authors note that, like other chronically ill individuals, dystonia patients frequently utilize CAM methods, often in addition to conventional treatment. There is a growing need to evaluate scientifically the effect of CAM methods on symptom severity and quality of life in dystonia, to prevent utilization of costly and ineffective CAM treatments.
Junker J, et al. Utilization and perceived effectiveness of complementary and alternative medicine in patients with dystonia. Movement Disorders: Official Journal of the Movement Disorder Society 19(2):158-61.