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Between 2019 and 2022, there was a marked rise in adolescents/young adults seeking urgent help for functional tic-like behaviours (FTLBs). Given the global scale of this phenomenon, we aimed to pool cases from different institutions in an international registry to better characterize this spectrum and facilitate future longitudinal observation.An international collaborative group from 10 tertiary referral centres for tic disorders collected retrospective data on FTLB patients who sought specialists' attention between the last quarter of 2019 and June 2022. An audit procedure was used for collection of data, which comprised demographics, course of presentation and duration, precipitating and predisposing factors, phenomenology, comorbidities, and pharmacological treatment outcome.During the study period, we collected data on 294 patients with FTLBs, 97% of whom were adolescents and young adults and 87% of whom were female. FTLBs were found to have a peak of severity within 1 month in 70% of patients, with spontaneous remissions in 20%, and a very high frequency of complex movements (85%) and vocalizations (81%). Less than one-fifth of patients had pre-existing primary tic disorder, 66% had comorbid anxiety disorders, 28% comorbid depressive disorders, 24% autism spectrum disorder and 23% attention deficit/hyperactivity disorder. Almost 60% explicitly reported exposure to tic-related social media content. The vast majority of pharmacologically treated patients did not report benefit with tic-suppressing medications.Our data from the largest multicentre registry of FTLBs to date confirm substantial clinical differences from primary tic disorders. Social modelling was the most relevant contributing factor during the pandemic. Future longitudinal analyses from this database may help understand treatment approaches and responsiveness.

Tuberous sclerosis complex (TSC) is a genetic disorder caused by mutations on the TSC1/TSC2 genes, which result in alterations in molecular signalling pathways involved in neurogenesis and hamartomas in the brain and other organs. TSC carries a high risk for autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD), although the reasons for this are unclear. One proposal is that TSC-related alterations in molecular signalling during neurogenesis lead to atypical development of neural networks, which are involved in the occurrence of ASD and ADHD in TSC. We investigated this proposal in young people with TSC who have been studied longitudinally since their diagnosis in childhood. Electroencephalography (EEG) was used to examine oscillatory connectivity in functional neural networks and local and global network organisation during three tasks (resting-state, attentional and inhibitory control Go/Nogo task, upright and inverted face processing task) in participants with TSC (n = 48) compared to an age- and sex-matched group of typically developing Controls (n = 20). Compared to Controls, the TSC group showed hypoconnected neural networks in the alpha frequency during the resting-state and in the theta and alpha frequencies during the Go/Nogo task (P ≤ .008), as well as reduced local network organisation in the theta and alpha frequencies during the Go/Nogo task (F = 3.95, P = .010). There were no significant group differences in network metrics during the face processing task. Increased connectivity in the hypoconnected alpha-range resting-state network was associated with greater ASD and inattentive ADHD symptoms (rho≥.40, P ≤ .036). Reduced local network organisation in the theta-range during the Go/Nogo task was significantly associated with higher hyperactive/impulsive ADHD symptoms (rho = −.43, P = .041). These findings suggest that TSC is associated with widespread hypoconnectivity in neural networks and support the proposal that altered network function may be involved in the co-occurrence of ASD and ADHD in TSC.

Effective support for autistic individuals is lacking in Brazil. Few centres offer services and those that do are limited in therapeutic options and geographical location. Paediatric Autism Communication Therapy is a low-intensity, evidence-based parent-mediated social-communication intervention that may be useful for this scenario. This implementation study aimed to assess the acceptability and feasibility of Paediatric Autism Communication Therapy for young autistic children (aged 2–10 years) in Brazil. Parents ( n = 18) of 2- to 10-year-old autistic children and clinicians ( n = 20) who work with autistic children in Brazil were interviewed and the data analysed using thematic analysis to explore their perceptions concerning the acceptability and feasibility of Paediatric Autism Communication Therapy. In addition, Paediatric Autism Communication Therapy was delivered to a case series of 15 further parent–child dyads; these parents were interviewed at the end of the therapy, and the data were analysed using thematic analysis. All parents and clinicians had favourable opinions about the acceptability, feasibility and perceived effectiveness of a parent-mediated intervention conducted mainly in the home. However, they also highlighted obstacles concerning the implementation of Paediatric Autism Communication Therapy in Brazil, especially related to engaging Brazilian parents in a parent-mediated model of therapy. Based on these data, minor adaptations were made to the original Paediatric Autism Communication Therapy protocol to facilitate the implementation of the intervention in Brazil. Lay abstract Parents of autistic children and health professionals who work with autistic children in Brazil had positive views about introducing Paediatric Autism Communication Therapy as a therapy for autistic children in Brazil. The parents and clinicians also mentioned some difficulties about using Paediatric Autism Communication Therapy in Brazil. We made adaptations to Paediatric Autism Communication Therapy to address these difficulties. Paediatric Autism Communication Therapy is a therapy to support the development of social and communication skills for autistic children aged 2–10 years. The therapy is conducted with the autistic child’s parent. Paediatric Autism Communication Therapy has not been used in Brazil before. There are few therapy options available for autistic children in Brazil and we believed that Paediatric Autism Communication Therapy may be useful. We asked three groups of people in Brazil about their views of Paediatric Autism Communication Therapy, after explaining how the therapy works. Group 1 included 18 parents of autistic children aged 2–10 years. Group 2 included 20 health professionals such as psychologists who work with autistic children. Group 3 included 15 parents of autistic children aged 2–7 years who received the Paediatric Autism Communication Therapy. We learned that parents and clinicians felt that Paediatric Autism Communication Therapy would be a beneficial therapy for autistic children in Brazil. We also found out about the challenges of using Paediatric Autism Communication Therapy in Brazil. We used these findings to make small cultural adaptations to Paediatric Autism Communication Therapy to make it more suitable for Brazil.

Background and purpose: In 2020, health professionals witnessed a dramatic increase in referrals of young people with rapid onset of severe tic-like behaviours. We assembled a working group to develop criteria for the clinical diagnosis of functional tic-like behaviours (FTLBs) to help neurologists, pediatricians, psychiatrists, and psychologists recognize and diagnose this condition. Methods: We used a formal consensus development process, using a multiround, web-based Delphi survey. The survey was based on an in-person discussion at the European Society for the Study of Tourette Syndrome (ESSTS) meeting in Lausanne in June 2022. Members of an invited group with extensive clinical experience working with patients with Tourette syndrome and FTLBs discussed potential clinical criteria for diagnosis of FTLBs. An initial set of criteria were developed based on common clinical experiences and review of the literature on FTLBs and revised through iterative discussions, resulting in the survey items for voting. Results: In total, 24 members of the working group were invited to participate in the Delphi process. We propose that there are three major criteria and two minor criteria to support the clinical diagnosis of FTLBs. A clinically definite diagnosis of FTLBs can be confirmed by the presence of all three major criteria. A clinically probable diagnosis of FTLBs can be confirmed by the presence of two major criteria and one minor criterion. Conclusions: Distinguishing FTLBs from primary tics is important due to the distinct treatment paths required for these two conditions. A limitation of the ESSTS 2022 criteria is that they lack prospective testing of their sensitivity and specificity.

To examine the association between perinatal adversities and neurodevelopmental outcome in tuberous sclerosis complex (TSC).The Tuberous Sclerosis 2000 study is a prospective, longitudinal UK study of TSC. In phase 1, mutation type, TSC family history, tuber characteristics, presence of cardiac rhabdomyomas, seizure characteristics, and intellectual ability were assessed in 125 children affected with TSC (64 females, 61 males; median age 39mo, range 4-254). In phase 2, 88 participants (49 females, 39 males; median age 148mo, range 93-323) were assessed for neurodevelopmental outcomes including intellectual ability, autism spectrum disorder, and attention-deficit/hyperactivity disorder. Perinatal histories of 88 participants with TSC and 80 unaffected siblings were collected retrospectively using the Obstetric Enquiry Schedule and coded with a modified Gillberg Optimality Scale to measure levels of perinatal adversity. Data were analysed using Mann-Whitney U tests, Spearman's rank correlation, and linear regression with robust standard errors.Children with familial TSC experienced significantly greater perinatal adversity than unaffected siblings. Perinatal adversity was higher in children with TSC-affected mothers than those with unaffected mothers. There was no significant association between perinatal adversities and neurodevelopmental outcomes after controlling for confounders.Maternal TSC is a significant marker of elevated perinatal risk in addition to risks incurred by fetal genotype. Pregnancies complicated by maternal or fetal TSC require higher vigilance, and mechanisms underlying increased perinatal adversity require further research.Higher perinatal adversity is associated with familial tuberous sclerosis complex (TSC). Maternal TSC was associated with higher frequencies of several perinatal risk markers. Paternal TSC was not associated with higher levels of perinatal adversity. Perinatal adversity levels in TSC1 and TSC2 subgroups did not differ significantly. Perinatal adversities were not associated with neurodevelopmental outcomes.

Children with genetic conditions may experience significant mental health difficulties such as anxiety and challenging behaviour. However, understanding of the feasibility and effectiveness of psychological interventions for emotional and behavioural problems in the context of genetic conditions is limited. Low-intensity psychological interventions have demonstrated promise in paediatric populations and may be able to address their mental health difficulties. A case series design was used to assess the feasibility of low-intensity interventions for emotional and behavioural difficulties in children and young people with genetic conditions recruited from a mental health drop-in centre at a tertiary hospital. Participants received seven weekly sessions with a trained practitioner. The intervention was based on existing modular treatments and evidence-based self-help materials. Feasibility and treatment satisfaction were assessed, as well as measures of symptoms of anxiety and challenging behaviour, treatment goals and quality of life, at baseline, during treatment and 6-month follow-up. Five participants received treatment for challenging behaviour, one for anxiety, and one for obsessive compulsive disorder. All participants completed treatment. Clinically significant change in the SDQ Total score was found in three participants. All participants demonstrated progress in goals and symptoms of emotional and behavioural difficulties over the course of treatment. Low-intensity psychological interventions for emotional and behavioural difficulties in children and young people with genetic conditions is feasible, acceptable and potentially beneficial. Further research is warranted to examine the effectiveness of the intervention and its use in clinical paediatric settings. Key learning aims (1) To gain a basic understanding of low-intensity psychological intervention in children and young people with genetic conditions. (2) To enhance understanding of the practicalities and acceptability of delivering low-intensity psychological intervention to children and young people with genetic conditions and co-morbid emotional and behavioural difficulties. (3) To learn about the potential clinical benefits of delivering low-intensity psychological intervention to children and young people with genetic conditions in the context of stepped care.

Background Children with chronic health conditions and their parents are at greater risk of developing emotional and behavioural problems compared to their physically healthy peers. The psychological impact on parents is crucial to understand given the relationship between parental mental health and child emotional and behavioural difficulties. This study was part of a broader research project examining the acceptability, feasibility and impact of a ‘Mental Health and Psychological Wellbeing Drop‐in Centre’ in a paediatric hospital providing access to support and intervention for children and their families. This paper aimed to investigate the impact of the centre on parents (n = 148). Methods Parental anxiety and depression were assessed using the GAD‐7 and PHQ‐9 at baseline and 6‐month post‐baseline. Child mental health was assessed using the parent‐report Strengths and Difficulties Questionnaire (SDQ). If parents had significant mental health needs, a brief intervention/signposting to relevant services was provided. Results At baseline, 48% of parents scored above clinical threshold for anxiety and 41% for depression, and parent reported child SDQ scores were correlated with parental anxiety and parental low mood. Self‐reported parental anxiety and low mood decreased at 6‐months post‐baseline (parental anxiety: mean decrease = 2.29 [1.22–3.36], d = 0.38; parental low mood: mean decrease = 1.81 [0.64–3.00], d = 0.28). There were no significant correlations between change in parent reported child wellbeing and changes in parental low mood and anxiety between baseline and 6‐month post‐baseline. Conclusions Assessing and providing a brief treatment to address the mental health needs of parents of children with comorbidity may bring important benefits. It is recommended that children's mental health services consider assessment of parental mental health as part of routine care.