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From the Department of Neuropsychiatry (Dr. Robertson), Royal Free and University College Medical School, London, UK; the Section of Epidemiology and General Practice (Dr. Banerjee), The Institute of Psychiatry, De Crespigny Park, London, UK; the University of Rochester (Dr. Kurlan), Strong Memorial Hospital, Rochester, NY; the Yale Child Study Center (Drs. Cohen, Leckman, and Pauls), Yale University, New Haven, CT; Primary Children’s Hospital (Dr. McMahon), Salt Lake City, UT; Toronto Western Hospital (Dr. Sandor), Department of Psychiatry, Toronto, Ontario, Canada; and Academic Hospital Rotterdam–Dijkzigt (Dr. van de Wetering), Department of Psychiatry, Rotterdam, the Netherlands.
Address correspondence and reprint requests to Dr. Sube Banerjee, Senior Lecturer in Psychiatry, Section of Epidemiology and General Practice, The Institute of Psychiatry, De Crespigny Park, London SE5 8AF, UK; e-mail: spjussb{at}iop.kcl.ac.uk
BACKGROUND: The clinical characteristics of Tourette syndrome (TS) present challenges for the systematic determination of whether individuals are affected and severity. Vocal and motor tics wax and wane, decrease over time, and may be voluntarily suppressible, and therefore may be absent at interview. Current instruments measure symptoms at interview or rate symptom severity only. Method:— To minimize error in case ascertainment and produce an instrument measuring lifetime likelihood of having had TS, clinical members of the American Tourette Syndrome Association International Genetic Collaboration developed the Diagnostic Confidence Index (DCI). The expert group worked collaboratively with progressive revision in consensus workshops using existing diagnostic criteria as guidelines. The DCI produces a score from 0 to 100 that is a measure of the likelihood of having or ever having had TS.
RESULTS: The DCI was administered to 280 consecutive patients with TS attending a TS clinic; 264 (94%) completed it, indicating high feasibility and acceptability. Its correlation with other instruments and associations with psychopathology provide support for its being a lifetime measure of TS.
CONCLUSIONS: The DCI is a useful, practicable instrument in the clinic or research practice allowing an assessment of lifetime likelihood of TS. Further work is needed to test the DCI’s psychometric properties, such as its validity and reliability in populations of interest.
Key words: Tourette syndrome—Diagnostic criteria—Consensus—Diagnosis—Rating scale.
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