Exploring Adults’ Experiences of Treatment for Tic & Tourette Syndrome
Research type
Research Study
Full title
Exploring Adults' Experiences of Treatment for Tic and Tourette Syndrome
IRAS ID
330111
Contact name
Breda Cullen
Contact email
Sponsor organisation
University of Glasgow
Duration of Study in the UK
1 years, 1 months, 0 days
Research summary
Research Summary -
Background
Tourette’s syndrome (TS) and chronic tic disorder (TD) are characterised by the presence of chronic motor and phonic tics, with onset during the developmental period. A recent meta-analysis suggested that the prevalence is around 118 cases of TS per million adults (Levine et al., 2019). Recently, a small body of literature has emerged reporting the experience of TS as multidimensional, relating to self-identity threat, social withdrawal, self-stigma, social support, and pain management (Malli et al., 2019; Perkins et al., 2020; Taylor et al., 2022). Comprehensive Behavioural Intervention for Tics (CBIT) is a well-established treatment for children and adults (McGuire et al., 2014; Piacentini et al., 2010; Pringsheim et al., 2019). However, no study to our knowledge, focuses on experiences through the CBIT pathway.
Aims
The study aims to explore the process by which adult participants with TS/TD make sense of their experiences moving through a CBIT treatment pathway, developing an insight into their unique perceptions, understanding, and impact on their lives.Methods
A qualitative approach will be employed in the form of interpretative phenomenological analysis (IPA). We will aim to recruit approximately eight individuals who have been medically diagnosed. Participants will need to have either completed the CBIT pathway or attended a minimum of three sessions. Semi-structured, one-to-one interviews will be conducted.Practical Applications
This study will provide a greater understanding of CBIT with the aim of creating a positive impact on guidance for improving patient experiences and care provisions.Lay Summary of Results -
Background: Tourette’s Syndrome (TS) and tic disorder (TD) are characterised by the presence of movement and vocal tics, that often appear at first in childhood. Tics are sudden and fast movements or sounds a person makes. Comprehensive Behavioural Intervention for Tics (CBIT) is a good treatment option for children and adults (Pringsheim et al., 2019). In contrast to previous research, this study gives a unique perspective of adults' experiences of CBIT utilising a qualitative approach, with the aim of positively impacting guidance for improving patient experiences and care.
Aims and Questions: The study aimed to explore the experiences of adult participants with TS/TD moving through a CBIT pathway. The study addressed four key questions;
i. How do adults make sense of their experiences of the CBIT pathway?
ii. How do expectations shape an individual’s experience of the CBIT?
iii. How do adults with TS/TD perceive their sense of self after experiencing the CBIT pathway?
iv. What are the keys parts of CBIT that effect change for individuals?
Methods:
Participants: We recruited five individuals diagnosed with TS/TD. Participants were recruited through the CBIT treatment pathway at NHS Greater Glasgow and Clyde Neuropsychology service.
Consent: Patients were asked to indicate their interest by contacting the research team. The Principal Investigator provided further information, and written consent was sought.
Design of study: A qualitative approach taken in the form of interpretative phenomenological analysis (IPA). IPA looks at someone’s experiences of something (Smith & Fieldsend, 2021).
Data collection: A semi-structured, one-to-one interview was carried out. Interviews lasted around 50 minutes.
Main Findings and Conclusion: Four experiential themes were derived from the interviews. The first theme captured the diagnosis experiences of individuals with tics, focusing on issues such as diagnostic ambiguity, treatment availability, and stigma. The second theme addressed strategies for managing tics within CBIT, identifying both helpful and unhelpful processes. The third theme emphasised the significance of quality of life (QoL) before and after treatment. Finally, the fourth theme highlighted the role of the therapeutic alliance. This study has underlined the importance of further research into adult services for TS/TD, focusing on diagnostic processes, referral pathways, treatment access, and the role of the therapeutic relationship in CBIT.
Clinical Recommendations: Our findings emphasise the ongoing concerns about validation and stigma linked to a TS/TD diagnosis. The healthcare system plays a key role in addressing these issues, but the lack of clear guidelines for assessing and treating TS/TD makes it harder to provide the best care. Clinicians should be well-informed about different treatment options and adaptable in adjusting care to each person. Finally, a better understanding of how TS/TD affects QoL will help guide treatment priorities and resource allocation for adults.REC name
London - Hampstead Research Ethics Committee
REC reference
24/PR/0388
Date of REC Opinion
30 Apr 2024
REC opinion
Further Information Favourable Opinion