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ORIGINAL RESEARCH article
Front. Psychiatry
Sec. Adolescent and Young Adult Psychiatry
Volume 16 - 2025 | doi: 10.3389/fpsyt.2025.1581666
This article is part of the Research TopicLife with Tic Disorders: From Childhood to AdulthoodView all 4 articles
Growing Up with Tic Disorders: an Italian Survey on Quality of Life and Access to Care
Provisionally accepted- Section of Child and Adolescent Neuropsychiatry, Department of Human Neuroscience, , Sapienza University of Rome, Rome, Lazio, Italy
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Background: 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.Method: 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.Results: 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).Conclusion: 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.
Keywords: Tourette Syndrome, Tics, healthcare, Quality of Life, stigma, access to care
Received: 22 Feb 2025; Accepted: 14 Apr 2025.
Copyright: © 2025 Baglioni, Esposito, Notaristefano, Di Iorio, Romano and Pisani. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence: Sara Romano, Section of Child and Adolescent Neuropsychiatry, Department of Human Neuroscience, , Sapienza University of Rome, Rome, 00185, Lazio, Italy
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