The diagnosis of Tourette's Syndrome: communication and impact

No study to date has investigated differences in perception regarding the manner in which a diagnosis of Tourette's Syndrome (TS) is communicated and the impact that this diagnosis can have on patients, as well as their relatives and physicians. The main objective was to explore the personal experiences regarding the communication and impact of a TS diagnosis on those who receive the diagnosis, their caregivers and physicians. A qualitative research methodology was used in this study, based on the use of focus groups (FGs). All health professionals, persons with TS and their relatives said that TS was difficult to diagnose. However, each group perceived different causes for the difficulty. Physicians cited the complexity of the symptoms, while the patients themselves noted the general lack of knowledge regarding the disease. In adittion, the physicians and the relatives both noted that the symptoms of TS were often hidden behind family guilt. The communication of the diagnosis to relatives of children with TS was not adequate because of poor understanding and interpretation of the clinical terminology. The most important conclusion was that the current method for communicating the diagnosis of TS to patients and relatives should be improved to facilitate better understanding and interpretation.