Health related quality of life in patients with dystonia and their caregivers in New Zealand and Australia

Health Related Quality of Life (HRQL) was assessed by the SF‐36 in a group of patients with dystonia in New Zealand and Australia. The caregivers of these people were also asked to participate. Low scores from the SF‐36 indicate a disability or limitation in HRQL. Compared with the national norms of the respective countries, the participants with dystonia for both countries were significantly lower in the eight dimensions of the SF‐36, suggesting that patients with dystonia have lower HRQL compared with their respective national norms without dystonia. In contrast to the patients with dystonia, caregivers did not show lower HRQL scores than their national norms, suggesting that while dystonia affects the HRQL of those with the disorder, their caregivers may be less affected. Descriptive and demographic information were also gathered and are discussed. An important factor that may affect the HRQL of patients with dystonia is the length of time required to be diagnosed in this sample and the number of medical practitioners the patients consulted prior to a confirmed diagnosis. © 2007 Movement Disorder Society