Macerollo A, Superbo M, Gigante A F, Livrea P, Defazio G
Department of Basic Medical Sciences, Neuroscience and Sense Organs, Aldo Moro University of Policlinico Hospital, Piazza Giulio Cesare 24, 70124 Bari, Italy.
Department of Basic Medical Sciences, Neuroscience and Sense Organs, Aldo Moro University of Policlinico Hospital, Piazza Giulio Cesare 24, 70124 Bari, Italy.
J Clin Neurosci. 2015 Mar;22(3):608-10. doi: 10.1016/j.jocn.2014.09.014. Epub 2015 Jan 7.
Adult-onset dystonia (AOD) may manifest in focal forms (as blepharospasm, oromandibular dystonia, cervical dystonia, laryngeal dystonia, and hand dystonia) or in segmental forms. Time from onset of dystonia to diagnosis can be an indicator of the quality of care received during the diagnosis of AOD, likely reflecting factors associated with both the patient and their health system. Three previously reported single-center studies showed that diagnosis of AOD may be delayed for several years. Here, we examined the time lapse between onset and diagnosis in patients with different forms of AOD from an Italian movement disorder center. We found the time lapse between dystonia onset and diagnosis was very long for patients who developed AOD before 1980; and even in the most recent years reaching a correct diagnosis required more than year in almost half of cases. Our results suggest that the delay in diagnosis of adult-onset focal and segmental dystonia has improved over time, but remains unacceptable. The findings are a promising indicator of improvements in care of this uncommon disorder. However, education of patients and doctors is still needed.
成人起病的肌张力障碍（AOD）可表现为局灶性形式（如眼睑痉挛、口下颌肌张力障碍、颈部肌张力障碍、喉部肌张力障碍和手部肌张力障碍）或节段性形式。从肌张力障碍起病到诊断的时间可以作为AOD诊断过程中所接受医疗质量的一个指标，这可能反映了与患者及其医疗系统相关的因素。此前三项单中心研究表明，AOD的诊断可能会延迟数年。在此，我们研究了来自意大利运动障碍中心的不同形式AOD患者从起病到诊断的时间间隔。我们发现，1980年之前发病的AOD患者，从肌张力障碍起病到诊断的时间间隔非常长；即使在最近几年，几乎一半的病例仍需要一年多时间才能做出正确诊断。我们的结果表明，成人起病的局灶性和节段性肌张力障碍的诊断延迟虽已随时间有所改善，但仍不可接受。这些发现是这种罕见疾病护理改善的一个有希望的指标。然而，患者和医生的教育仍有必要。
