The impact of Gilles de la Tourette in adolescent life: an interview study.

Background and objectives: Gilles da la Tourette Syndrome (GTS) is a neurodevelopmentaldisorder included in the group of tic disorders according to the DSM-5 (1). Onset of GTS usuallyoccurs during childhood with a peak incidence around 7 (4). Tic severity spikes around 10-12years and symptoms usually decrease with age (5). However, for 20% of diagnosed patients,symptoms persist. Manifestation of symptoms can vary drastically between individuals andwithin the same individual over time (14). The aim of this study is to gain insight into thepersonal impact for adolescents on their daily life. What do adolescents think about GTS? Arethere consequences of GTS on a day-to-day basis? In short, how do adolescents experiencetheir diagnosis?Methods: We recruited and selected 10 participants through UZ Leuven/ UPC KU Leuven. Allpatients either had been diagnosed or treated within this care setting. To establish a baselineof communicative skills exclusion criteria consisted of an IQ below 80 and/or the presence ofa language disorder. We then conducted 6 semi structured interviews using an interview guide.We anonymized all collected data before we uploaded it to NVivo 12. We used this qualitativeanalysis software to manage and analyze the data via thematic analysis. After initial coding,we restructured and discussed personal findings within the research group.Results: Multiple themes became visible during interview-taking and after encoding the data.Despite the small sample, different points of view arose, as well as similarities. Control overtics and the importance of social context seemed to be the most important topics. These ofteninterfere, as social settings often lead to a higher wish for control and need for suppression.Attributed causes for the onset of GTS or triggers for tics vary from stress to social stimuli,such as speaking in public. Tic presentation also varies greatly between individuals. Theparticipants distinguish between simple tics (vocal and physical), complex tics and tic attacks.Participants mention preliminary sensations, although not all of them. Tics impact daily life indifferent ways and on different levels, ranging from physical influence to communication andinteraction with others. When it comes down to the general knowledge of surrounding peerson the topic, all participants agreed on a significant gap. The adolescents hope and anticipatethat the broader society soon will display a learning curve on how to address and how not toaddress people with GTS.Discussion: The importance of general knowledge in society, and especially the lack thereof,came forward multiple times in this research. Embedding existing research into the educationof medical students, starting with the education of general medicine, could therefore make adifference. Current studies often focus on pathophysiology, clinical presentation or diagnostictools. However, the personal experiences of adolescents seem underexposed. Even thoughthey could lead to a better understanding of the disorder as well. In this study we did not takecomorbidities into account, this could serve as a subject of future research.