Cox Joanna H, Nahar Ananda, Termine Cristiano, Agosti Massimo, Balottin Umberto, Seri Stefano, Cavanna Andrea E
Sandwell and West Birmingham NHS Foundation Trust, Birmingham, UK.
University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
Adolesc Health Med Ther. 2019 Jun 11;10:75-82. doi: 10.2147/AHMT.S175765. eCollection 2019.
Tourette syndrome (TS) is a complex neurodevelopmental disorder characterized by multiple motor and vocal tics, which commonly presents with multiple behavioral problems, including co-morbid attention-deficit and hyperactivity disorder and obsessive-compulsive disorder. Both tics and co-morbid conditions have been shown to potentially affect patients' health-related quality of life. While TS typically presents in childhood, its manifestations peak in severity during adolescence, a critical period in which affected individuals are exposed to potential stigma from peers. Physical and behavioral manifestations can also contribute to stigma, which subsequently leads to poorer health outcomes, discrimination, and a reduced willingness to seek help. The available evidence suggests that young patients with TS can experience reduced social acceptance from peers and difficulties establishing relationships. There is also evidence that some health care professionals share the unhelpful belief that young patients with TS should be disciplined in order to correct their disruptive behavior, based on the erroneous assumption that tics can be consciously controlled. Studies focussed on self-perception in patients with TS have yielded inconsistent results, with some studies showing problems in the domains of self-concept and self-esteem. Feelings of isolation, loneliness, and experiences of bullying have been reported more consistently. Interventions are required to reduce misconceptions about the condition and thus reduce stigma through targeted education and behavioral interventions. A multi-faceted approach that focuses on educating children, adults, and educators about TS would be beneficial to help alleviate stigma. This can be combined with self-advocacy and tailored psychological therapies for young patients with TS. The present paper reviews the current literature on stigma and self-perception in adolescents with TS in order to inform clinical decisions about management strategies and possible interventions to improve health-related quality of life.
抽动秽语综合征（TS）是一种复杂的神经发育障碍，其特征为多种运动性和发声性抽动，常伴有多种行为问题，包括共病的注意力缺陷多动障碍和强迫症。抽动症状和共病情况均已显示可能影响患者的健康相关生活质量。虽然TS通常在儿童期出现，但其症状严重程度在青春期达到峰值，这是一个关键时期，在此期间受影响个体容易受到同龄人的潜在污名化。身体和行为表现也可能导致污名化，进而导致更差的健康结果、歧视以及寻求帮助的意愿降低。现有证据表明，患有TS的年轻患者可能会经历来自同龄人的社会接受度降低以及建立人际关系困难。也有证据表明，一些医疗保健专业人员持有无益的观念，即基于抽动可以被有意识控制这一错误假设，认为患有TS的年轻患者应该受到管教以纠正其破坏性行为。专注于TS患者自我认知的研究结果并不一致，一些研究显示在自我概念和自尊领域存在问题。孤独感、寂寞感和受欺凌经历的报告则更为一致。需要通过有针对性的教育和行为干预来减少对该病症的误解，从而减少污名化。一种多方面的方法，即专注于对儿童、成人和教育工作者进行关于TS的教育，将有助于减轻污名化。这可以与自我倡导以及为患有TS的年轻患者量身定制的心理治疗相结合。本文综述了当前关于TS青少年污名化和自我认知的文献，以便为有关管理策略和可能的干预措施的临床决策提供信息，以改善健康相关生活质量。
