Publications arising from the work of the steering group

  • Development of a tic service model for children and young people in England: a Delphi study

    Development of a tic service model for children and young people in England: a Delphi study

    Abstract:

    To develop an evidence-based, consensus-driven service model for the identification, assessment and treatment of tic disorders in children and young people (CYP) in England, addressing the absence of dedicated pathways and national clinical guidance.

    Authors:

    Hall SSRattu NRHall CL, et al

    Year published:

    2026

    Further details:

    BMJ Open

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  • Lessons learned from including Patient and Public Involvement members throughout research projects in Tic Disorder research

    Lessons learned from including Patient and Public Involvement members throughout research projects in Tic Disorder research

    Abstract:

    Background: Shared and reflective practice when conducting Patient and Public Involvement and Engagement (PPIE) with underserved communities requires a collaborative approach to understand how best to involve public contributors across the lifecycle of a research project. Researchers from the MindTech research group at the University of Nottingham, UK, conducted three studies aiming to improve healthcare services for people living with tics, and address gaps in current treatment provision: ‘Tourette’s Hear Us’ – a qualitative exploration of experiences accessing healthcare for tics; INTEND (ImproviNg Tic services in EnglaND) – a study to develop a care pathway for children and young people with tics and ORBIT-UK (Online Remote Behavioural Intervention for Tics UK) – a study to transform an online behavioural intervention for tics into a digital treatment implemented in services. Each study included a PPIE panel. We present these three case studies of how PPIE was conducted and key learnings across them.

    Methods: PPIE panels were actively involved in project design, recruitment, data collection, interpretation, and dissemination. Research teams documented the PPIE activities and their impact on the research. Collaboration between researchers facilitated discussions of the progress and impact of PPIE in each study and enabled shared learning to collectively improve future PPIE methods.

    Learnings: Our key learnings, developed through challenge, discussion, and resolution, are presented across the three case studies and include: the importance of representative PPIE panels comprised of members with genuine lived experiences; the provision of safe and inclusive spaces to support members to share their perspectives; supporting communication to facilitate contributions and engagement; tracking and reflecting on the impact of PPIE activities on the project; and sustaining involvement throughout the research cycle, including co-authoring outputs. Evaluating PPIE methods through panel feedback was also highlighted.

    Authors:

    Nikita R. Rattu, Olivia Hastings, Charlotte L. Hall, Kelly-Marie Prentice, Rebecca Woodcock, Emma McNally, Paul Stevenson, Suzanne Parsons, Madeleine J. Groom and Camilla M. Babbage

    Year published:

    2026

    Further details:

    Springer Nature Link

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  • ImproviNg Tic services in EnglaND: a multi-method study to explore existing healthcare service provision for children and young people with tics and Tourette syndrome

    ImproviNg Tic services in EnglaND: a multi-method study to explore existing healthcare service provision for children and young people with tics and Tourette syndrome

    Abstract:

    Background: Timely access to diagnostic assessment and treatment is essential to improve function and mitigate the risk of poor long-term outcomes in children and young people (CYP) with tics.

    Objective: This study aimed to explore (i) how tic services for CYP in England are currently organised, including access to assessment and treatment and (ii) healthcare professionals’ (HCPs) experiences of assessing and treating tics.

    Methods: Two methodologies were used to examine tic service provision. First, two freedom of information (FOI) requests were sent to Integrated Care Boards (FOI1) and service providers (FOI2) to gather data on referral and assessment processes, and treatments offered. Second, a national survey of HCPs explored their experiences and training needs when assessing and treating tics.

    Findings: FOI responses indicated that 12 of 62 services (19.4%), primarily located in the London area, offered a full pathway for the referral, assessment and treatment of tics in CYP.

    The national survey sample (n=184) included psychologists, paediatricians, neurologists and mental health nurses. Most described services as poorly structured and reported a need for additional resources and training in the assessment and treatment of tics.

    Conclusions: Inconsistent and underfunded tic service provision across England limits HCPs’ ability to support CYP with tics effectively. There is an urgent need to develop clear service pathways offering both assessment and treatment, and to equip HCPs with sufficient training and resources to provide appropriate care.

    Clinical implications :Current tic service provision does not meet the healthcare needs of CYP in England. Without improvements, CYP are at increased risk of poorer long-term outcomes.

    Authors:

    Nikita R RattuSophie S Hall, Charlotte L Hall, Tara Murphy, Joseph Kilgariff, Nadya James, Emma McNally, Alexia Jeayes, Kareem Khan, Suzanne Rimmer, Louise Thomson, Madeleine Jane Groom

    Year published:

    2025

    Further details:

    BMJ Mental Health

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  • ‘For the love of God, just refer me’: a co-produced qualitative study of the experiences of people with Tourette Syndrome and tic disorders accessing healthcare services in the UK

    ‘For the love of God, just refer me’: a co-produced qualitative study of the experiences of people with Tourette Syndrome and tic disorders accessing healthcare services in the UK

    Abstract:

    Objectives: Chronic tic disorders (CTDs)—such as Tourette Syndrome (TS)—are neurodevelopmental disorders affecting at least 1% of the population, causing repetitive involuntary movements and vocalisations known as tics. This study aimed to explore the lived experiences of accessing healthcare for people with CTD or TS and their families in the United Kingdom (UK), as part of a larger programme of work to inform change to healthcare services for this population.

    Design: Informed and designed with extensive patient and public involvement, the design utilised qualitative research using focus groups. Reflexive thematic analysis was used to analyse the data.

    Setting: Participants were recruited via online support groups, social media and research registers.

    Authors:

    Babbage CM, Davies EB, Jones DP, Stevenson P, Salvage J, Anderson S, McNally E & Groom MJ

    Year published:

    2025

    Further details:

    BMJ Mental Health

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  • Healthcare utilisation and costs associated with poor access to diagnosis and treatment for children and young people with tic disorders

    Healthcare utilisation and costs associated with poor access to diagnosis and treatment for children and young people with tic disorders

    Abstract:

    Background: There are no specific national guidelines in England to guide healthcare professionals in how to assess or treat young people with tic disorders. Access to evidence-based treatment, including behavioural therapy, is of limited availability.

    Objectives: This study examined the economic impact on services arising from a lack of access to appropriate healthcare services for young people with tic disorders, alongside the impact on school attendance.

    Authors:

    Hall, C. L., Le Novere, M., Murphy, T., McNally, E., Hollis, C., & Hunter, R.

    Year published:

    2024

    Further details:

    BMJ Mental Health, 27(1), Article e301241.

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  • Exploring Empowerment in Online Support Communities for People Living With Tic Disorders and Tourette Syndrome: Qualitative Survey Study of User Experiences

    Exploring Empowerment in Online Support Communities for People Living With Tic Disorders and Tourette Syndrome: Qualitative Survey Study of User Experiences

    Abstract:

    People with tic disorders (TDs)—such as Tourette syndrome—report poorer quality of life compared to non-TD peers, and experience considerable difficulties, including societal stigmatization and barriers to accessing health care and evidence-based interventions. Peer support can help improve psychological outcomes, and online support communities (OSCs) are one way to access psychological support. Empowerment involves improving an individual’s cognitive processes to increase their ability to assert control over their health condition. OSCs have been suggested to facilitate empowerment, but this has not yet been investigated in users of OSCs for TDs.

    Authors:

    Ella C Ford, Neil S Coulson, E Bethan Davies

    Year published:

    2025

    Further details:

    JMIR Publications

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Other relevant publications related to our work

 

  • Online remote behavioural intervention for tics in 9- to 17-year-olds: The ORBIT RCT with embedded process and economic evaluation

    Online remote behavioural intervention for tics in 9- to 17-year-olds: The ORBIT RCT with embedded process and economic evaluation

    Abstract:

    Background: Behavioural therapy for tics is difficult to access, and little is known about its effectiveness when delivered online.

    Objective: To investigate the clinical and cost-effectiveness of an online-delivered, therapist- and parent-supported therapy for young people with tic disorders.

    Authors:

    Hollis, C., Hall, C. L., Khan, K., Le Novere, M., Marston, L., Jones, R., Hunter, R., Brown, B. J., Sanderson, C., Andrén, P., Bennett, S. D., Chamberlain, L. R., Davies, E. B., Evans, A., Kouzoupi, N., McKenzie, C., Heyman, I., Kilgariff, J., Glazebrook, C., … Murphy, T.

    Year published:

    2023

    Further details:

    Health Technology Assessment (Winchester, England), 27(18), 1–120

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  • Patients’ experience of accessing support for tics from primary care in the UK: An online mixed-methods survey.

    Patients’ experience of accessing support for tics from primary care in the UK: An online mixed-methods survey.

    Abstract:

    Tics are common in children and young people and may persist into adulthood. Tics can cause challenges with social, occupational, physical, and academic functioning. The current study explores the perceptions of adults with tics and parents/carers of young people with tics regarding their experience of accessing support from professionals in primary care in the UK.

    Authors:

    Marino, C., Khan, K., Groom, M. J., Hall, S. S., Anderson, S., Mcnally, E., Murphy, T., & Hall, C. L.

    Year published:

    2023

    Further details:

    BMC Health Services Research, 23(1), 788.

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  • Impact of the COVID-19 pandemic on incidence of tics in children and young people: A population-based cohort study.

    Impact of the COVID-19 pandemic on incidence of tics in children and young people: A population-based cohort study.

    Abstract:

    Since the onset of the coronavirus (COVID-19) pandemic, clinicians have reported an increase in presentations of sudden and new onset tics particularly affecting teenage girls. This population-based study aimed to describe and compare the incidence of tics in children and young people in primary care before and during the COVID-19 pandemic in England.

    Authors:

    Jack, R. H., Joseph, R. M., Coupland, C. A. C., Hall, C. L., & Hollis, C.

    Year published:

    2023

    Further details:

    eClinicalMedicine, 57, 101857.

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  • Addressing co-occurring conditions in behavioural therapy for tic disorders: A review and guideline.

    Addressing co-occurring conditions in behavioural therapy for tic disorders: A review and guideline.

    Abstract:

    Co-occurring psychiatric conditions are very common in tic disorders and Tourette syndrome. These additional symptoms are often detrimental to quality of life and may impact upon the implementation and efficacy of evidence-based behavioural therapies (BT) for tics. Combining a review of the available literature, relevant theory, and expert clinical practice, we present a guideline for implementing behavioural and psychosocial interventions when common comorbidities are present. These include attention-deficit hyperactivity disorder (ADHD), obsessive–compulsive disorder (OCD), anxiety, disruptive behaviour, autism spectrum disorder (ASD) and depression. Practical recommendations are provided for assessment, formulation and management of specific and multiple comorbidities in BT for both children and adults. Despite comorbidities being common in tic disorders, few studies have comprehensively addressed how they may influence the efficacy or implementation of existing therapies or how such treatments may need to be modified or sequenced. We outline recommendations for future research, including randomised control trials of BT for those with specific or multiple comorbidities, as well as adequately powered sub-group analyses within larger scale trials or naturalistic study designs. Transdiagnostic models of psychiatric disorders and treatment, including modular cross-diagnostic therapies, which recognise the dimensionality of psychiatric disorders are also highlighted as an important focus in treatment development in tic disorders.

    Authors:

    Sanderson, C., Verdellen, C., Debes, N., Tárnok, Z., van de Griendt, J., Zimmerman-Brenner, S., & Murphy, T.

    Year published:

    2022

    Further details:

    European Child & Adolescent Psychiatry.

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  • Chapter Fourteen—Co-occurring ADHD symptoms and electrophysiological correlates of cognitive control in Tourette syndrome.

    Chapter Fourteen—Co-occurring ADHD symptoms and electrophysiological correlates of cognitive control in Tourette syndrome.

    Abstract:

    Individuals with Tourette syndrome (TS) frequently have co-occurring symptoms of attention-deficit/hyperactivity disorder (ADHD). ADHD is a neurodevelopmental condition characterized by persistent, developmentally inappropriate and impairing symptoms of inattention, hyperactivity and impulsivity. Importantly, ADHD is strongly associated with impairments in cognitive control. Since the self-regulatory processes that constitute cognitive control are implicated in tic control and response to behavioral tic therapies in individuals with TS, it is crucial to understand how co-occurring ADHD affects these processes. In this chapter we review and critically evaluate the literature that has investigated this issue. We specifically focus on studies that examined effects of co-occurring ADHD on electrophysiological correlates of cognitive control in TS since these measures are particularly sensitive to the underlying neurocognitive mechanisms of cognitive control.

    Authors:

    Shephard, E., Groom, M. J., & Jackson, G. M.

    Year published:

    2022

    Further details:

    In M. E. Lavoie & A. E. Cavanna (Eds.), International Review of Movement Disorders (Vol. 3, pp. 423–441). Academic Press.

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  • “I’m in pain and I want help”: An online survey investigating the experiences of tic-related pain and use of pain management techniques in people with tics and tic disorders.

    “I’m in pain and I want help”: An online survey investigating the experiences of tic-related pain and use of pain management techniques in people with tics and tic disorders.

    Abstract:

    Tic disorders (TDs) are complex neurological conditions characterized by involuntary, persistent vocalizations and motor movements called tics. Tics involve brief muscle movements and can impair many aspects of daily functioning and quality of life in patients – and their physical nature can cause pain. Understanding individuals' experiences of tic-related pain and pain management could help explore this under-researched area and identify additional support needs for this population. The aim of this study was to investigate experiences of pain and use of pain management techniques in people with tic disorders.

    Authors:

    Taylor, E., Anderson, S., & Davies, E. B.

    Year published:

    2022

    Further details:

    Frontiers in Psychiatry, 13.

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  • Therapist-supported online remote behavioural intervention for tics in children and adolescents in England (ORBIT): A multicentre, parallel group, single-blind, randomised controlled trial.

    Therapist-supported online remote behavioural intervention for tics in children and adolescents in England (ORBIT): A multicentre, parallel group, single-blind, randomised controlled trial.

    Abstract:

    Exposure and Response Prevention (ERP) is a form of behavioural therapy for tics; however, its effectiveness remains uncertain. We aimed to evaluate the effectiveness of internet-delivered, therapist-supported, and parent-assisted ERP for treatment of tics in children and young people with Tourette syndrome or chronic tic disorder.

    Authors:

    Hollis, C., Hall, C. L., Jones, R., Marston, L., Novere, M. L., Hunter, R., Brown, B. J., Sanderson, C., Andrén, P., Bennett, S. D., Chamberlain, L. R., Davies, E. B., Evans, A., Kouzoupi, N., McKenzie, C., Heyman, I., Khan, K., Kilgariff, J., Glazebrook, C., … Murray, E.

    Year published:

    2021

    Further details:

    The Lancet Psychiatry, 8(10), 871–882.

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  • COVID-19 related increase in childhood tics and tic-like attacks. Archives of Disease in Childhood,

    COVID-19 related increase in childhood tics and tic-like attacks. Archives of Disease in Childhood,

    Abstract:

    Since the onset of the COVID-19 pandemic, paediatricians and child mental health practitioners have noticed an increase in tic symptoms in some children and adolescents already diagnosed with tic disorders.1 Interestingly, clinicians have also seen a marked increase in presentations of sudden and new onset of severe tics and ‘tic-like’ attacks.

    There is an urgent need to collate systematic data on this group as this is a rare and unusual subtype of tics and Tourette syndrome, differing in age and type of onset and expected patterns of tics. Typically, childhood tics start around 5–7 years and show a waxing and waning course of predominantly motor tics, more commonly affecting boys in a ratio of 4:1. The new surge of referrals consists of adolescent girls with sudden onset of motor and phonic tics of a complex and bizarre nature. In London, UK specialist tic clinics at each of the two children’s hospitals, each centre received four to six referrals per year (out of a total of approximately 200 in 2019/2020), which were acute onset tics in teenage girls. In the last 3 months (end of 2020–January 2021), both centres have been receiving three to four referrals per week of this nature which, if it continues, would amount to 150–200 cases per year and effectively double the referral rate.

    Initial impressions are that these adolescent girls fall into two groups: the first present with explosive functional tic-like movements on a background of diagnosis of, or vulnerability to, motor and phonic tics. The second group comprises florid, completely new onset tic-like disorder that appears functional in nature. Both groups may have undiagnosed neurodevelopmental impairment, autism spectrum disorder (ASD), specific learning difficulties and attention deficit hyperactivity disorder (ADHD). Distinguishing these two subtypes can be challenging; however, the likelihood is that in either case the precipitating factor for symptomatology and impairment is anxiety (probably in part COVID-19 related), and importantly, the same management strategies are suggested for both of these groups.

    Authors:

    Heyman, I., Liang, H., & Hedderly, T.

    Year published:

    2021

    Further details:

    106(5), 420–421.

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  • Implicit sequence learning in young people with Tourette syndrome with and without co-occurring attention-deficit/hyperactivity disorder.

    Implicit sequence learning in young people with Tourette syndrome with and without co-occurring attention-deficit/hyperactivity disorder.

    Abstract:

    Impaired habit-learning has been proposed to underlie the tic symptoms of Tourette syndrome (TS). However, accounts differ in terms of how habit-learning is altered in TS, with some authors proposing habit formation is impaired due to a deficient ‘chunking’ mechanism, and others proposing habit-learning is overactive and tics reflect hyperlearned behaviours. Attention-deficit/hyperactivity disorder (ADHD) frequently co-occurs with TS and is known to affect cognitive function in young people with co-occurring TS and ADHD (TS + ADHD). It is unclear, however, how co-occurring ADHD symptoms affect habit-learning in TS. In this study, we investigated whether young people with TS would show deficient or hyperactive habit-learning, and assessed the effects of co-occurring ADHD symptoms on habit-learning in TS. Participants aged 9–17 years with TS (= 18), TS + ADHD (= 17), ADHD (= 13), and typical development (= 20) completed a motor sequence learning task to assess habit-learning. We used a 2 (TS-yes, TS-no) × 2 (ADHD-yes, ADHD-no) factorial analysis to test the effects of TS, ADHD, and their interaction on accuracy and reaction time indices of sequence learning. TS was associated with intact sequence learning, but a tendency for difficulty transitioning from sequenced to non-sequenced performance was suggestive of hyper-learning. ADHD was associated with significantly poorer accuracy during acquisition of the sequence, indicative of impaired habit-learning. There were no interactions between the TS and ADHD factors, indicating young people with TS + ADHD showed both TS- and ADHD-related atypicalities in habit-learning.

    Authors:

    Shephard, E., Groom, M. J., & Jackson, G. M.

    Year published:

    2019

    Further details:

    Journal of Neuropsychology, 13(3), 529–549.

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  • Visuomotor learning and unlearning in children and adolescents with tourette syndrome.

    Visuomotor learning and unlearning in children and adolescents with tourette syndrome.

    Abstract:

    Tics, like habits, are inflexible and repetitive behaviours that are acquired over a period of time. It has been proposed that tics arise in TS as a result of increased habit learning: which may bias the child to acquire automatic behaviours (i.e., tics) more readily than is normal and make it harder to unlearn maladaptive habits once they have been acquired. Using a well-established visuomotor adaptation task, we investigated motor learning in a group of children and adolescents with a clinical diagnosis of TS relative to a group of age and gender matched typically developing individuals. In particular, we quantified differences in the strength and quality of motor learning and unlearning in TS, and the consolidation of motor learning over a 24 h washout period. We demonstrated that there was a marginally significant decrease in learning rate in the individuals with TS relative to age and gender matched typically developing controls. However, this effect was not associated with tic severity and could be entirely accounted for by the severity of co-occurring ADHD symptoms. Thus, once ADHD symptoms had been accounted for, there were no between group differences in learning rate or the degree of learning observed. By contrast, and more importantly, we found that following learning the rate of forgetting (unlearning) was significantly negatively associated with motor tic severity, such that individuals with more severe tics took longer to unlearn previously learnt motor patterns of behaviour. This finding is consistent with the proposal that TS is associated with alterations in the striatal habit learning system and with the view that TS may make it harder to unlearn maladaptive motor habits once they have been acquired.

    Authors:

    Kim, S., Jackson, S. R., Groom, M., & Jackson, G. M.

    Year published:

    2018

    Further details:

    Cortex, 109, 50–59.

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  • Electrophysiological correlates of reinforcement learning in young people with Tourette syndrome with and without co-occurring ADHD symptoms.

    Electrophysiological correlates of reinforcement learning in young people with Tourette syndrome with and without co-occurring ADHD symptoms.

    Abstract:

    Altered reinforcement learning is implicated in the causes of Tourette syndrome (TS) and attention-deficit/hyperactivity disorder (ADHD). TS and ADHD frequently co-occur but how this affects reinforcement learning has not been investigated. We examined the ability of young people with TS (n = 18), TS + ADHD (N = 17), ADHD (n = 13) and typically developing controls (n = 20) to learn and reverse stimulus-response (S-R) associations based on positive and negative reinforcement feedback. We used a 2 (TS-yes, TS-no) × 2 (ADHD-yes, ADHD-no) factorial design to assess the effects of TS, ADHD, and their interaction on behavioural (accuracy, RT) and event-related potential (stimulus-locked P3, feedback-locked P2, feedback-related negativity, FRN) indices of learning and reversing the S-R associations. TS was associated with intact learning and reversal performance and largely typical ERP amplitudes. ADHD was associated with lower accuracy during S-R learning and impaired reversal learning (significantly reduced accuracy and a trend for smaller P3 amplitude). The results indicate that co-occurring ADHD symptoms impair reversal learning in TS + ADHD. The implications of these findings for behavioural tic therapies are discussed.

    Authors:

    Shephard, E., Jackson, G. M., & Groom, M. J.

    Year published:

    2016a

    Further details:

    International Journal of Developmental Neuroscience, 51, 17–27.

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  • The effects of co-occurring ADHD symptoms on electrophysiological correlates of cognitive control in young people with Tourette syndrome.

    The effects of co-occurring ADHD symptoms on electrophysiological correlates of cognitive control in young people with Tourette syndrome.

    Abstract:

    The ability to withhold unwanted behaviours is one of several self-regulatory processes that facilitate voluntary control over thought and action, referred to by the term ‘cognitive control’. As a group, young people with uncomplicated TS (those without co-occurring symptoms of other disorders) show equivalent (Baym, Corbett, Wright, & Bunge, 2008; Roessner, Albrecht, Dechent, Baudewig, & Rothenberger, 2008) or enhanced (Jackson, Mueller, Hambleton, & Hollis, 2007; Jackson et al., 2011; Jung, Jackson, Nam, Hollis, & Jackson, 2015; Mueller, Jackson, Dhalla, Datsopoulos, & Hollis, 2006) cognitive control performance compared with typically developing participants (but see Crawford, Channon, & Robertson, 2005). Furthermore, within TS samples those with the poorest cognitive control have the most severe tics (Baym et al., 2008; Jackson et al., 20072011; Jung et al., 2015) and show the smallest reductions in tic severity with behavioural therapy (Deckersbach, Rauch, Buhlmann, & Wilhelm, 2006), suggesting an association between cognitive control and tic control. In support of this, cognitive control performance in TS is associated with increased activity in pre-frontal cortex (Baym et al., 2008; Jackson et al., 2011; Serrien, Orth, Evans, Lees, & Brown, 2005) and changes in white matter integrity in frontal cortex (Jackson et al., 2011), suggesting compensatory neural adaptation may underlie the enhanced cognitive control in TS (Jung, Jackson, Parkinson, & Jackson, 2013). Together, these findings indicate that lower tic severity, greater tic control, and a positive response to behavioural tic treatments are associated with cognitive control, behaviourally and neurally. Interestingly, several studies have reported cognitive control impairments in adults with TS (Rankins, Bradshaw, & Georgiou-Karistianis, 2006; Watkins et al., 2005). These individuals represent the minority of patients in whom tics do not remit in late adolescence/early adulthood. It is possible that poor cognitive control in these individuals reflects an inability to gain control of their tics, which might explain the non-remittance of their symptoms.

    Authors:

    Shephard, E., Jackson, G. M., & Groom, M. J.

    Year published:

    2016b

    Further details:

    Journal of Neuropsychology, 10(2), 223–238.

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  • Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette Syndrome: A systematic review and qualitative analysis.

    Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette Syndrome: A systematic review and qualitative analysis.

    Abstract:

    The study found that antipsychotics, noradrenergic agents and habit reversal training/comprehensive behavioural intervention for tics are effective in reducing tics in children and young people with Tourette syndrome. The balance of benefits and harms favours the most commonly used medications: risperidone (Risperdal, Janssen), clonidine (Dixarit, Boehringer Ingelheim) and aripiprazole (Abilify, Otsuka).

    Authors:

    Hollis, C., Pennant, M., Cuenca, J., Glazebrook, C., Kendall, T., Whittington, C., Stockton, S., Larsson, L., Bunton, P., Dobson, S., Groom, M., Hedderly, T., Heyman, I., Jackson, G. M., Jackson, S., Murphy, T., Rickards, H., Robertson, M., & Stern, J.

    Year published:

    2016

    Further details:

    Health Technology Assessment, 20(4), 1–450.

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  • Perceptions of treatment for tics among young people with Tourette syndrome and their parents: A mixed methods study.

    Perceptions of treatment for tics among young people with Tourette syndrome and their parents: A mixed methods study.

    Abstract:

    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.

    Methods: 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.

    Authors:

    Cuenca, J., Glazebrook, C., Kendall, T., Hedderly, T., Heyman, I., Jackson, G., Murphy, T., Rickards, H., Robertson, M., Stern, J., Trayner, P., & Hollis, C.

    Year published:

    2015

    Further details:

    BMC Psychiatry, 15, 46

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  • The impact of Tourette Syndrome in adults: Results from the Tourette Syndrome impact survey.

    The impact of Tourette Syndrome in adults: Results from the Tourette Syndrome impact survey.

    Abstract:

    Chronic tic disorders (CTD) are characterized by motor and/or vocal tics. Existing data on the impact of tics in adulthood is limited by small, treatment-seeking samples or by data aggregated across adults and children. The current study explored the functional impact of tics in adults using a nationwide sample of 672 participants with a self-reported CTD. The impact of tics on physical, social, occupational/academic, and psychological functioning was assessed. Results suggested mild to moderate functional impairment and positive correlations between impairment and tic severity. Notable portions of the sample reported social or public avoidance and experiences of discrimination resulting from tics. Compared to previously reported population norms, participants had more psychological difficulties, greater disability, and lower quality of life. The current study suggests that CTDs can adversely impact functioning in adults and highlights the need for clinical interventions and systemic efforts to address tic-related impairments.

    Authors:

    Conelea, C. A., Woods, D. W., Zinner, S. H., Budman, C. L., Murphy, T. K., Scahill, L. D., Compton, S. N., & Walkup, J. T.

    Year published:

    2013

    Further details:

    Community Mental Health Journal, 49(1), 110–120. 

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  • Compensatory Neural Reorganization in Tourette Syndrome.

    Compensatory Neural Reorganization in Tourette Syndrome.

    Abstract:

    Children with neurological disorders may follow unique developmental trajectories whereby they undergo compensatory neuroplastic changes in brain structure and function that help them gain control over their symptoms []. We used behavioral and brain imaging techniques to investigate this conjecture in children with Tourette syndrome (TS). Using a behavioral task that induces high levels of intermanual conflict, we show that individuals with TS exhibit enhanced control of motor output. Then, using structural (diffusion-weighted imaging) brain imaging techniques, we demonstrate widespread differences in the white matter (WM) microstructure of the TS brain that include alterations in the corpus callosum and forceps minor (FM) WM that significantly predict tic severity in TS. Most importantly, we show that task performance for the TS group (but not for controls) is strongly predicted by the WM microstructure of the FM pathways that lead to the prefrontal cortex and by the functional magnetic resonance imaging blood oxygen level-dependent response in prefrontal areas connected by these tracts. These results provide evidence for compensatory brain reorganization that may underlie the increased self-regulation mechanisms that have been hypothesized to bring about the control of tics during adolescence.

    Authors:

    Jackson, S. R., Parkinson, A., Jung, J., Ryan, S. E., Morgan, P. S., Hollis, C., & Jackson, G. M.

    Year published:

    2011

    Further details:

    Current Biology, 21(7), 580–585.

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