Natsumi Matsuda1, Toshiaki Kono2, Maiko Nonaka1, Miyuki Fujio3, Yukiko Kano4. 1. Department of Child Psychiatry, The University of Tokyo Hospital, Tokyo, Japan. 2. Department of Forensic Psychiatry, National Institute of Mental Health, National Center of Neurology and Psychiatry, Tokyo, Japan. 3. Department of Child Psychiatry, The University of Tokyo Hospital, Tokyo, Japan; Graduate School of Education, The University of Tokyo, Tokyo, Japan. 4. Department of Child Psychiatry, The University of Tokyo Hospital, Tokyo, Japan; Department of Child Neuropsychiatry, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan. Electronic address: kano-tky@umin.ac.jp.
Abstract
OBJECTIVE: Because of the semi-voluntary nature of tics, patients with Tourette' syndrome (TS) often report self-initiated coping with tics. Our goals were to understand the experiences of self-initiated coping with tics by individuals with TS (e.g., suppression frequency, suppression ability, and side effects of tic suppression), and investigate the effects of tic control on quality of life (QOL). METHOD: One hundred participants with TS (38 children and 62 adults) answered a questionnaire concerning tic control, QOL, and other clinical characteristics. RESULT: Fifty-eight percent of the participants always or frequently tried to suppress tics daily. In contrast, over 90% felt uncomfortable or incomplete when they suppressed tics and needed concentration or extra effort to suppress them. Thirty-four percent could suppress tics for less than one minute and 65% could suppress tics for less than 10min. Higher subjective satisfaction with tic control was positively correlated with life satisfaction and QOL. CONCLUSION: Individuals with TS often attempt self-initiated coping in their daily lives, especially through tic suppression, despite experiencing subjective discomfort and being aware that the duration of tic suppression is often limited. Moreover, it was found that their subjective satisfaction with tic control and effective tic suppression might have a positive influence on their life satisfaction and QOL. Thus, self-initiated coping with tics is vital for improving the QOL of individuals with TS and intervention aimed at enhancing subjective satisfaction with tic control could help manage TS.
OBJECTIVE: Because of the semi-voluntary nature of tics, patients with Tourette' syndrome (TS) often report self-initiated coping with tics. Our goals were to understand the experiences of self-initiated coping with tics by individuals with TS (e.g., suppression frequency, suppression ability, and side effects of tic suppression), and investigate the effects of tic control on quality of life (QOL). METHOD: One hundred participants with TS (38 children and 62 adults) answered a questionnaire concerning tic control, QOL, and other clinical characteristics. RESULT: Fifty-eight percent of the participants always or frequently tried to suppress tics daily. In contrast, over 90% felt uncomfortable or incomplete when they suppressed tics and needed concentration or extra effort to suppress them. Thirty-four percent could suppress tics for less than one minute and 65% could suppress tics for less than 10min. Higher subjective satisfaction with tic control was positively correlated with life satisfaction and QOL. CONCLUSION: Individuals with TS often attempt self-initiated coping in their daily lives, especially through tic suppression, despite experiencing subjective discomfort and being aware that the duration of tic suppression is often limited. Moreover, it was found that their subjective satisfaction with tic control and effective tic suppression might have a positive influence on their life satisfaction and QOL. Thus, self-initiated coping with tics is vital for improving the QOL of individuals with TS and intervention aimed at enhancing subjective satisfaction with tic control could help manage TS.
Authors: Charlotte L Rae; Jim Parkinson; Sophie Betka; Cassandra D Gouldvan Praag; Samira Bouyagoub; Liliana Polyanska; Dennis E O Larsson; Neil A Harrison; Sarah N Garfinkel; Hugo D Critchley Journal: Brain Commun Date: 2020-11-27