Cuenca José, Glazebrook Cris, Kendall Tim, Hedderly Tammy, Heyman Isobel, Jackson Georgina, Murphy Tara, Rickards Hugh, Robertson Mary, Stern Jeremy, Trayner Penny, Hollis Chris
Division of Psychiatry and Applied Psychology, School of Medicine, Institute of Mental Health, University of Nottingham, Jubilee Campus, Nottingham, UK.
National Collaborating Centre for Mental Health, Royal College of Psychiatrists, London, UK.
BMC Psychiatry. 2015 Mar 11;15:46. doi: 10.1186/s12888-015-0430-0.
Tourette syndrome (TS) among young people is associated with psychosocial difficulties and parents play an important role in the management of the condition. Clinical guidelines have been developed for the treatment of TS and tics, but little is known about how young people and their parents perceive their treatment options or their desired outcomes of treatment. The aim of this study is to explore perceptions of treatments for tics among young people with TS and their parents.
In-depth interviews with 42 young people with TS and a mixed-methods, online survey of 295 parents of young people with TS. Participant recruitment was conducted through Tourettes Action (TA): a non-profit UK organisation for the support of people with TS. Interview transcripts were analysed using thematic analysis and responses to survey open-ended questions were analysed using content analysis. Triangulation of qualitative and quantitative data from the parents' survey and qualitative data from the interviews with young people was used to increase the validity and depth of the findings.
A strong theme was the perception that health professionals have limited knowledge of TS and its treatment. Medication was a common treatment for tics and both young people and parents described benefits of medication. However, adverse effects were frequently described and these were a common reason for stopping medication among young people. Aripiprazole was viewed most positively. Access to behavioural interventions for tics was limited and 76% of parents wanted this treatment to be available for their child. Some young people had reservations about the effectiveness or practicality of behavioural interventions. Reduction and abolition of tics were desired outcomes of treatment, but both parents and young people also identified the importance of increasing control over tics and reducing anxiety-related symptoms. For young people, managing the urge to tic was an important outcome of treatment.
The results suggest a need for more training in the identification and management of TS and wider availability of behavioural treatments. Clinical trials could explore the effectiveness of Aripiprazole used in combination with psycho-educational interventions to reduce anxiety and promote a sense of control.
青少年抽动秽语综合征（TS）与心理社会问题相关，父母在该病症的管理中起着重要作用。已经制定了治疗TS和抽动的临床指南，但对于青少年及其父母如何看待他们的治疗选择或期望的治疗结果知之甚少。本研究的目的是探讨患有TS的青少年及其父母对抽动治疗的看法。
对42名患有TS的青少年进行深入访谈，并对295名患有TS的青少年的父母进行混合方法的在线调查。通过抽动秽语症行动组织（TA）招募参与者，TA是英国一个支持TS患者的非营利组织。使用主题分析法分析访谈记录，并使用内容分析法分析对调查开放式问题的回答。将父母调查的定性和定量数据与青少年访谈的定性数据进行三角测量，以提高研究结果的有效性和深度。
一个突出的主题是认为医疗专业人员对TS及其治疗的了解有限。药物治疗是抽动的常见治疗方法，青少年和父母都描述了药物治疗的益处。然而，不良反应经常被提及，这是青少年停药的常见原因。阿立哌唑的评价最为积极。获得抽动行为干预的机会有限，76%的父母希望他们的孩子能够接受这种治疗。一些青少年对行为干预的有效性或实用性持保留态度。减少和消除抽动是期望的治疗结果，但父母和青少年也都认识到加强对抽动的控制和减轻焦虑相关症状的重要性。对于青少年来说，控制抽动冲动是治疗的一个重要结果。
结果表明需要在TS的识别和管理方面进行更多培训，并更广泛地提供行为治疗。临床试验可以探索阿立哌唑与心理教育干预相结合以减轻焦虑和增强控制感的有效性。
