title: Diagnosing idiopathic dystonia: must it take so long?
abstract: Idiopathic dystonia is a chronic, disabling movement disorder. This study attempted to verify anecdotal evidence that sufferers experience delay in achieving a correct diagnosis. A survey of 133 patients revealed that diagnosis after first seeking help required a mean of 3.8 years. Diagnostic latency varied considerably, with 22 per cent of respondents reporting a diagnostic latency of more than five years, while a further 22 per cent reported a latency of one month or less, with a sample median of 1.5 years. Respondents consulted a mean of 8.3 practitioners, including a mean of 2.1 general practitioners and 1.6 neurologists. Results were consistent with reports of lengthy diagnostic delays and inappropriate referrals. Greater awareness of dystonia and referral of suspected cases to a neurologist interested in movement disorders are recommended.
authors.affiliation: Faculty of Nursing and Health Studies, University of Western Sydney, Nepean.
authors.forename: A T
authors.initials: AT
authors.lastname: Powell
authors.forename: J W
authors.initials: JW
authors.lastname: Bidewell
authors.forename: A C
authors.initials: AC
authors.lastname: Walker
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D003951:Diagnostic Errors; D004421:Dystonia / Q000175:diagnosis* / Q000209:etiology / Q000503:physiopathology; D005260:Female; D006302:Health Services Research; D006801:Humans; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data*; D012017:Referral and Consultation; D011795:Surveys and Questionnaires; D013997:Time Factors