The prognosis of fixed dystonia: A follow-up study

N. M. Ibrahim, D. Martino, B. P C van de Warrenburg, N. P. Quinn, K. P. Bhatia, R. J. Brown, M. Trimble, A. Schrag

    Research output: Contribution to journalArticlepeer-review


    Background: The syndrome of fixed dystonia includes both CRPS-dystonia and psychogenic dystonia. The underlying mechanisms are unclear, but a high prevalence of neuropsychiatric illness has previously been reported. Methods: Clinical and neuropsychiatric follow-up study by telephone and self-administered instruments (HADS, SDQ-20, DES II, EQ-5D), on 41 patients with fixed dystonia after a mean of 7.6 (±3.6) years. Results: We obtained information on clinical outcome in 35 (85.4%) patients and neuropsychiatric questionnaire data in 22 (53.7%). Eighty-three percent were women. Thirty-one percent had worsened, 46% were the same and 23% had improved, of whom 6% had major remissions. At follow-up, mean duration of illness was 11.8 (±4.9) years and mean age 43.2 (±14.8) years. Except for 1 patient who was re-diagnosed with corticobasal degeneration, the diagnosis remained unchanged in others. Forty-one percent had scores indicating anxiety and 18% indicating depression; 18% scored within the range of dissociative/somatoform disorders on DES II and 19% on SDQ-20. The mean EQ-5D index and VAS scores were 0.34 and 56.1%. Comparison between the 3 outcome groups revealed significant difference only in the EQ-5D (p = 0.003). Only baseline CRPS predicted a worse outcome (χ2 = 0.006). Conclusions: Our findings revealed that the prognosis of this syndrome is poor, with improvement in less than 25% of patients, major remission in only 6% and continued worsening in a third. A high rate of neuropsychiatric findings was noted and new neuropsychiatric features had occurred in some. Average health status was poor. Of the baseline parameters, only CRPS predicted poorer outcome. © 2009.
    Original languageEnglish
    Pages (from-to)592-597
    Number of pages5
    JournalParkinsonism and Related Disorders
    Issue number8
    Publication statusPublished - Sept 2009


    • Complex regional pain syndrome
    • CRPS
    • Fixed dystonia
    • Prognosis
    • Psychogenic dystonia


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