Baglioni V, Esposito D, Notaristefano I, Di Iorio G, Romano S, Pisani F
Department of Human Neuroscience, Unit of Child and Adolescent Neuropsychiatry, Sapienza University of Rome, Rome, Italy.
Front Psychiatry. 2025 May 13;16:1581666. doi: 10.3389/fpsyt.2025.1581666. eCollection 2025.
Tourette Syndrome (TS) and chronic tic disorders (TD) are complex neuropsychiatric conditions often associated with comorbidities. Despite their prevalence, these disorders are frequently underdiagnosed and poorly managed due to limited healthcare access and lack of specialized services. An online survey was conducted in Italy to assess access to care and the impact of TS/TD on social, educational, and occupational life.
A nationwide online survey, including 100 participants (mean age 23.1, SD 14.6; M:F=77:33), was developed to assess diagnostic-therapeutic processes and quality of life (QoL) in TS/TD. The survey had three sections: 1) Access to Care, 2) Tic Severity, and 3) Impact of TS/TD.
Diagnosis was delayed by an average of 7.7 years. The lack of clear information was a major issue, with caregivers reporting easier access to information than youths and adults with TS/TD (p= .042, OR: 0.37). Pharmacological treatment was the most common (53% currently, 63% previously), while psychotherapy was more common among children and early adolescents (50%) compared to older participants (25.6%) (p= .037). Specialized cognitive-behavioral treatments, such as EPT and HRT, were rare, with only 7% receiving HRT and none undergoing EPT. Comorbidities had a significantly greater impact on QoL than tics (p= .004, Cohen's d=0.3).
These findings highlight the need for improved access to specialized care, greater healthcare professional awareness, and enhanced support for individuals with TS/TD and their families, especially for early diagnosis and effective cognitive behavioral treatments.
抽动秽语综合征（TS）和慢性抽动障碍（TD）是复杂的神经精神疾病，常伴有共病。尽管其发病率较高，但由于医疗服务可及性有限和缺乏专业服务，这些疾病常常诊断不足且管理不善。在意大利进行了一项在线调查，以评估医疗服务的可及性以及TS/TD对社会、教育和职业生活的影响。
开展了一项全国性在线调查，共有100名参与者（平均年龄23.1岁，标准差14.6；男:女 = 77:33），旨在评估TS/TD的诊断治疗过程和生活质量（QoL）。该调查有三个部分：1）医疗服务可及性，2）抽动严重程度，3）TS/TD的影响。
诊断平均延迟7.7年。缺乏明确信息是一个主要问题，照料者报告比患有TS/TD的青少年和成年人更容易获取信息（p = 0.042，比值比：0.37）。药物治疗最为常见（目前为53%，以前为63%），而心理治疗在儿童和青少年早期（50%）比年龄较大的参与者（25.6%）更常见（p = 0.037）。专门的认知行为治疗，如暴露与反应预防疗法（EPT）和习惯逆转训练（HRT）很少见，只有7%的人接受HRT，无人接受EPT。共病对生活质量的影响显著大于抽动（p = 0.004，科恩d值 = 0.3）。
这些发现凸显了改善专业护理可及性、提高医疗保健专业人员意识以及加强对TS/TD患者及其家庭支持的必要性，特别是对于早期诊断和有效的认知行为治疗。
