An investigation into mothers' experiences of their children's functional tic-like behaviour and tic attacks.

OBJECTIVE: This is the first study to systematically explore the lived experiences of sudden and new onset of severe functional tics from the perspective of the mother's experiences and describes their attempts to access support services in the United Kingdom. METHOD: Twenty-One mothers of young people aged between 12 to 17 years with functional tic-like behaviour (FTLB) took part in semi-structured interviews. Thematic analysis of the transcribed interviews revealed gaps and inconsistencies within the process of gaining access to professional services and a lack of support for the management of tics and functional tic-like movements, in addition to highlighting the impact it had on daily family life. RESULTS: The themes generated included the occurrence and development of tics, the severity and intensity of symptoms, the psychological impact on the family and the need to make recommendations for a clear care pathway. Managing the impact of the FTLB and co-occurring conditions such as suicidal ideation and self-harm, as well as the physical and emotional trauma, commonly contributed to feelings of isolation and helplessness, which impacted negatively on the family's ability to function and participate in society. CONCLUSIONS: The findings emphasize the urgent need to create a clear management pathway for those experiencing FTLB, including the need for more professionals with relevant knowledge, to improve the dialogue with families during the referral process, whilst prioritising the treatment of anxiety and other identified mental health concerns.

Quality standards for the management of alcohol-related liver disease: consensus recommendations from the British Association for the Study of the Liver and British Society of Gastroenterology ARLD special interest group.

OBJECTIVE: Alcohol-related liver disease (ALD) is the most common cause of liver-related ill health and liver-related deaths in the UK, and deaths from ALD have doubled in the last decade. The management of ALD requires treatment of both liver disease and alcohol use; this necessitates effective and constructive multidisciplinary working. To support this, we have developed quality standard recommendations for the management of ALD, based on evidence and consensus expert opinion, with the aim of improving patient care. DESIGN: A multidisciplinary group of experts from the British Association for the Study of the Liver and British Society of Gastroenterology ALD Special Interest Group developed the quality standards, with input from the British Liver Trust and patient representatives. RESULTS: The standards cover three broad themes: the recognition and diagnosis of people with ALD in primary care and the liver outpatient clinic; the management of acutely decompensated ALD including acute alcohol-related hepatitis and the posthospital care of people with advanced liver disease due to ALD. Draft quality standards were initially developed by smaller working groups and then an anonymous modified Delphi voting process was conducted by the entire group to assess the level of agreement with each statement. Statements were included when agreement was 85% or greater. Twenty-four quality standards were produced from this process which support best practice. From the final list of statements, a smaller number of auditable key performance indicators were selected to allow services to benchmark their practice and an audit tool provided. CONCLUSION: It is hoped that services will review their practice against these recommendations and key performance indicators and institute service development where needed to improve the care of patients with ALD.

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

BACKGROUND: 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. METHODS: Two online cross-sectional surveys were completed by 33 adults with tics and 94 parents/carers of children with tics. Participants were recruited across three online tic support groups. Tic specialist psychologists, academic researchers, and people with lived experience of tics provided feedback on the surveys before they were made available online. Mixed-method analyses were conducted on the surveys. Qualitative data from the free-text responses were analysed using thematic analysis and triangulated with quantitative findings where appropriate. RESULTS: While some participants felt supported by general practitioners (GPs), many felt dismissed. The impact of tics was not always explored, nor information on tics provided, during the consultation. Although 78.7% of participants were referred to secondary care for their tics, some struggled to get the referral. Within secondary care, most adult respondents were assessed by neurologists whilst young people were typically assessed by paediatricians or psychiatrists. Most of these secondary care clinicians did not specialise in tic disorders, with only 27.9% of participants being assessed by tic specialists. Mode waitlist time was 3-6 months for young people and longer for adult respondents. Some participants were referred to multiple secondary care services, spanning neurology, paediatrics, and psychiatry, with each stating that they do not provide support for tics. 21% of participants mentioned being discharged from secondary care with no ongoing support. Almost one-third of respondents accessed support within private healthcare. CONCLUSIONS: Generally, more negative than positive experiences were reported. Possible contributing factors included a lack of clear tic referral pathways, long waitlists, a lack of information about tics provided in primary care appointments and a lack of support offered following diagnosis by secondary care services, together with poor access to tic specialist clinicians. This study highlights areas where improvements to UK services for tics can be made.

Case report: Advice for schools on managing functional tic-like behaviours.

There has been an increase in the occurrence of sudden onset functional tic-like behaviours in adolescents during the COVID-19 pandemic, which has had a significant impact on the affected individual's ability to engage with education. The aim of this article is to generate discussion and inform practice within schools with regard to the management of functional tic-like behaviours. An advice sheet for schools has been produced based on clinical expertise and experience of consulting with schools around the management within education settings. Case examples are presented highlighting the importance and impact of these strategies. We also highlight the need for further evaluation of the effectiveness of the advice sheet in collaboration with schools and families.

Diagnosis and Management of Functional Tic-Like Phenomena.

Over the past 3 years, a global phenomenon has emerged characterized by the sudden onset and frequently rapid escalation of tics and tic-like movements and phonations. These symptoms have occurred not only in youth known to have tics or Tourette syndrome (TS), but also, and more notably, in youth with no prior history of tics. The Tourette Association of America (TAA) convened an international, multidisciplinary working group to better understand this apparent presentation of functional neurological disorder (FND) and its relationship to TS. Here, we review and summarize the literature relevant to distinguish the two, with recommendations to clinicians for diagnosis and management. Finally, we highlight areas for future emphasis and research.

"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.

Objectives: 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. Methods: An online survey consisting of multiple choice and open-ended questions exploring experiences of tic-related pain, help-seeking behavior for tic-related pain, and use of pain relief techniques for tic-related pain, was circulated online via international Tourette syndrome patient associations, and one online support group for Tourette syndrome. The online survey was open to adults (≥16 years) with self-reported tics. Open-ended questions were analyzed using thematic analysis. Results: One hundred eighty-one participants (16-71 years; 58.0% female) from 18 countries completed the online survey. Several aspects of tics were associated with pain, including the physical effort of motor tics (n = 177, 97.8%), repetitive tics (n = 141, 77.9%) and the consequences of tics (n = 131, 72.4%). Nearly two-thirds (n = 118, 64.6%) had sought professional help for tic-related pain. Distraction techniques (n = 126, 69.6%), taking pain relief medication (n = 125, 69.1%) and altering tics (n = 111, 61.3%) were the most commonly-reported methods used to relieve and cope with tic-related pain. Thematic analysis found an interrelated complex relationship between participants' tics, pain, and pain management techniques, reflected in four themes: the "tic-pain" cycle, the impact of pain, the importance of support, and the perceived successfulness of pain management techniques. Conclusions: Tic-related pain was reported to have a significant physical and psychological impact which impacted aspects of daily living in people with tic disorders. The findings add to limited research suggesting tic-related pain is a dominant issue for individuals with tic disorders, potentially impacting upon their quality of life. Increased understanding of tic-related pain and its influence may be helpful in the long-term management of tic disorders, both in terms of clinical management and patients' self-management.

European clinical guidelines for Tourette Syndrome and other tic disorders: patients' perspectives on research and treatment.

The formation of a new umbrella organisation called Tics and Tourette Across the Globe (TTAG) representing Tic and Tourette Syndrome (TS) patient associations around the world has led to a clearer voice for patients with Tourette Syndrome (TS). An opportunity has been created for this group to bridge research, clinical work and shared decision-making between researchers, clinicians and patients across Europe, with the result of improving the treatment and management of TS. A survey was sent out to capture the patients' perspective on research and treatment, and 2269 participants responded. 71% of participants reported they would prefer research into how to treat TS and/or make symptoms better. The inclusion of patients' perspectives on research and treatment in the updated European clinical guidelines for TS and other tic disorders highlights the new opportunities that have been created for the participation of patients in the discussion of TS research.

Distinguishing and Managing Acute-Onset Complex Tic-like Behaviors in Adolescence.

Consistent with international reports,1 this group of Tourette syndrome (TS) experts has noticed a recent increase in adolescents presenting with tic-like symptoms that show a markedly atypical onset and course. These sudden-onset motor movements and vocalizations are often associated with significant impairment and disability, resulting in emergency department visits and hospitalizations for some affected youths.

Driving with Tic Disorders: An International Survey of Lived Experiences.

BACKGROUND: Little is known about the lived experiences of individuals with tic disorders when driving vehicles or trying to obtain a driving license. OBJECTIVE: To survey the driving-related experiences of adults with tic disorders. METHODS: A global survey was disseminated via social media, international patient organizations, and experts between April 27, 2020 and July 20, 2020. RESULTS: Participants were 228 adult individuals self-reporting a confirmed diagnosis of Tourette syndrome or chronic tic disorder. Of these, 183 (87.7%) had a driver's license. A minority (9%) reported that they had found it hard to pass the driving test. Tics only interfered with driving "a bit" (58.5%) or "not at all" (33%). A majority of participants reported being able to suppress their tics (39.5%) or that their tics are unchanged (28.5%) while driving. Nearly half of the participants (46.5%) had been involved in accidents, but only a negligible percentage (3.2%) considered that these were linked to the tics. Participants without a driver's license (n = 28, 12.3%) reported significantly more severe tics, compared to those with a license. The majority of these (60.7%) identified their tics as the main reason for not having a license and 64.3% said that they would like to receive support to obtain one. CONCLUSIONS: The majority of surveyed participants with chronic tic disorders reported minimal difficulties with driving. However, a non-negligible minority of more severe cases struggle with driving or refrain from driving altogether and would benefit from additional support. The results have implications for clinicians and vehicle licensing agencies.

Easing the transition to secondary education for children with autism spectrum disorder: An evaluation of the Systemic Transition in Education Programme for Autism Spectrum Disorder (STEP-ASD).

In mainstream education, the transition from primary to secondary school ('school transition') is difficult for children with autism spectrum disorder, being marked by high levels of emotional and behavioural difficulties. The Systemic Transition in Education Programme for Autism Spectrum Disorder (STEP-ASD) is a new, manualised school transition intervention. We investigated its feasibility and efficacy for children diagnosed with autism spectrum disorder (N = 37; mean age = 11.47 years; mean IQ = 85.24) using an unblinded, non-randomised, controlled design. Teachers found the intervention feasible and acceptable. Children receiving STEP-ASD (n = 17) showed a large (Cohen's d = 0.88) reduction in school-reported emotional and behavioural difficulties, whereas controls (n = 20) showed a slight increase (d = -0.1) (p = 0.010). These encouraging findings suggest the value of STEP-ASD as a low-intensity intervention for reducing problem behaviours and distress in children with autism spectrum disorder as they transition to mainstream secondary school.

The transition from primary to secondary school in mainstream education for children with autism spectrum disorder.

The transition from primary to secondary education (hereafter 'school transition') is a major ecological shift that poses considerable social, emotional, academic and organisational challenges. It is commonly assumed that this school transition is especially difficult for children with autism spectrum disorder, but that idea is mainly based on anecdotal evidence and requires systematic investigation. We describe change and continuity for children with autism spectrum disorder (N = 28, mean age = 11.29 years, mean full-scale IQ = 87.86) transitioning in mainstream education from primary to secondary school. Levels of psychopathology, adaptive functioning and peer victimisation were measured by parent, self and teacher report in the last year of primary school, and again after one term of secondary school. At follow-up, all participants were still in their secondary school, and there was no evidence for a marked escalation of difficulties during the transition. Instead, we observed high levels of psychopathology and maladaption at baseline which persisted across the transition and were in some cases under-recognised. By parent report, levels of bullying fell from primary to secondary school. Future research should investigate factors, such as school characteristics, that influence the move to secondary education in autism spectrum disorder, to inform the development of interventions to promote successful school transition.

Quantifying the RR of harm to self and others from substance misuse: results from a survey of clinical experts across Scotland.

OBJECTIVE: To produce an expert consensus hierarchy of harm to self and others from legal and illegal substance use. DESIGN: Structured questionnaire with nine scored categories of harm for 19 different commonly used substances. SETTING/PARTICIPANTS: 292 clinical experts from across Scotland. RESULTS: There was no stepped categorical distinction in harm between the different legal and illegal substances. Heroin was viewed as the most harmful, and cannabis the least harmful of the substances studied. Alcohol was ranked as the fourth most harmful substance, with alcohol, nicotine and volatile solvents being viewed as more harmful than some class A drugs. CONCLUSIONS: The harm rankings of 19 commonly used substances did not match the A, B, C classification under the Misuse of Drugs Act. The legality of a substance of misuse is not correlated with its perceived harm. These results could inform any legal review of drug misuse and help shape public health policy and practice.

Experience of an Inter-regional Research Symposium for Higher Psychiatric Trainees in Scotland.

OBJECTIVES: We present our experience of an annual research symposium for psychiatric trainees in Scotland. This paper aimed to consider trainees' involvement in research by examining firstly rates of publication and secondly the views of trainees. METHODS: A list of all presentations to the Senior Trainees' Annual Research Symposium (STARS) meetings 2007-2009 was compiled and a detailed search made of major research databases. A questionnaire survey examined the views of attendees at the 2009 meeting. RESULTS: Fifty percent of presented work achieved publication. Feedback from symposia attendees was almost universally positive. CONCLUSIONS: At a time of debate on the value of research sessions as part of higher training and a recent reduction in time allocated to research in the UK, we report on a thriving annual meeting. Research symposia for higher trainees were valued by participants and may be one useful means of encouraging trainee research.

The seasonality of bipolar affective disorder: comparison with a primary care sample using the Seasonal Pattern Assessment Questionnaire.

BACKGROUND: In contrast with recurrent unipolar depression, relatively little is known about the seasonality of depressive episodes in bipolar affective disorder (BAD). METHOD: We compared responses on the Seasonal Pattern Assessment Questionnaire (SPAQ) between a cohort of 183 patients with BAD and a large sample of patients in primary care (N=4746). Comparisons were adjusted for age and gender. RESULTS: 27% of the BAD patients fulfilled SPAQ criteria for Seasonal Affective Disorder (SAD. This gave an adjusted odds ratio of 3.73 (95% confidence intervals 2.64 to 5.27) in comparison with the rate among the primary care samples. Global seasonality scores were significantly higher among BAD patients (adjusted mean difference 1.73, 95% CI 0.97 to 2.49, p<0.001). LIMITATIONS: The SPAQ was originally designed as a screening instrument rather than as a case-finding instrument. CONCLUSIONS: Vigilance for seasonal symptom recurrence in BAD may be important with regard to management and relapse prevention.

White matter integrity in individuals at high genetic risk of bipolar disorder.

BACKGROUND: Bipolar disorder is a familial psychiatric disorder associated with reduced white matter integrity, but it is not clear whether such abnormalities are present in young unaffected relatives and, if so, whether they have behavioral correlates. We investigated with whole brain diffusion tensor imaging whether increased genetic risk for bipolar disorder is associated with reductions in white matter integrity and whether these reductions are associated with cyclothymic temperament. METHODS: Diffusion tensor imaging data of 117 healthy unaffected relatives of patients with bipolar disorder and 79 control subjects were acquired. Cyclothymic temperament was measured with the cyclothymia scale of the Temperament Evaluation of Memphis, Pisa and San Diego auto-questionnaire. Voxel-wise between-group comparisons of fractional anisotropy (FA) and regression of cyclothymic temperament were performed with tract-based spatial statistics. RESULTS: Compared to the control group, unaffected relatives had reduced FA in one large widespread cluster. Cyclothymic temperament was inversely related to FA in the internal capsules bilaterally and in left temporal white matter, regions also found to be reduced in high-risk subjects. CONCLUSIONS: These results show that widespread white matter integrity reductions are present in unaffected relatives of bipolar patients and that more localized reductions might underpin cyclothymic temperament. These findings suggest that white matter integrity is an endophenotype for bipolar disorder with important behavioral associations previously linked to the etiology of the condition.

Discrimination between attention deficit hyperactivity disorder and reactive attachment disorder in school aged children.

We aimed to determine whether it is possible to discriminate between children with attention deficit hyperactivity disorder (ADHD) and children with reactive attachment disorder (RAD) using standardized assessment tools for RAD. The study involved 107 children: 38 with a diagnosis of RAD and 30 with ADHD were recruited through community child and adolescent mental health services (CAMHS) and specialist ADHD clinics. In addition, 39 typically developing children were recruited through family practice. Clinicians were trained to use a standardized assessment package for RAD using a DVD with brief follow-up support. Discriminant function analysis was used to identify the items in the standardized assessment package that best discriminated between children with ADHD and children with RAD. Clinicians' ratings of RAD symptoms were reliable, particularly when focusing on eight core DSM-IV symptoms of RAD. Certain parent-report symptoms were highly discriminatory between children with ADHD and children with RAD. These symptoms included "cuddliness with strangers" and "comfort-seeking with strangers". A semi-structured interview with parents, observation of the child in the waiting room and teacher report of RAD symptoms aided diagnostic discrimination between the groups. Clinical diagnosis of RAD can be made reliably by clinicians, especially when focusing on eight core RAD symptoms. Clear discrimination can be made between children with RAD and children with ADHD.