Treatment failure in persistent tic disorders: an expert clinicians' consensus-based definition.

A standardized definition of treatment failure in the management of tics is currently lacking. Such definition would prevent persistent use of unnecessary interventions and help clinicians to determine when to offer less established treatments (e.g., deep brain stimulation surgery). To achieve an expert consensus-based definition of failure of medical treatments for tics, we used a multi-step, multi-round, web-based Delphi approach involving international specialist clinicians with specific expertise in tic disorders. These experts were identified through professional networks or consortia related to chronic tic disorders. We created a survey and reviewed the questions with stakeholders prior to two rounds of Delphi surveys, followed by a final review and discussion among research team members. Both survey rounds were completed using a sample of 36 expert stakeholders from 14 countries, including neurologists, psychiatrists, and clinical psychologists. The Delphi process led to consensus on 10 statements which formed the final definition of treatment failure. The definition was structured and operationalized according to two separate sections, one for behavioral and one for pharmacological treatments. Core components of the definition and its operationalization included lack of efficacy, adherence, and tolerability, as well as a definition of failure of behavioral therapies as a whole, and of pharmacological therapies as a whole. The group concluded that the components of this specific definition reflect the range and complexity of characteristics to consider in establishing tic-related treatment failure. Future research should assess the feasibility of this operational definition and whether it will change clinical decision-making and improve management outcomes.

Inhibitory Control Deficits in Children with Tic Disorders Revealed by Object-Hit-and-Avoid Task.

Background: Tic disorders may reflect impaired inhibitory control. This has been evaluated using different behavioural tasks, yielding mixed results. Our objective was to test inhibitory control in children with tics through simultaneous presentation of multiple, mobile stimuli. Methods: Sixty-four children with tics (mean age 12.4 years; 7.5-18.5) were evaluated using a validated robotic bimanual exoskeleton protocol (Kinarm) in an object-hit-and-avoid task, in which target and distractor objects moved across a screen and participants aimed to hit only the targets while avoiding distractors. Performance was compared to 146 typically developing controls (mean age 13 years; 6.1-19.9). The primary outcome was the percentage of distractors struck. Results: ANCOVA (age as covariate) showed participants struck significantly more distractors (participants without comorbid ADHD, 22.71% [SE 1.47]; participants with comorbid ADHD, 23.56% [1.47]; and controls, 15.59% [0.68]). Participants with comorbid ADHD struck significantly fewer targets (119.74 [2.77]) than controls, but no difference was found between participants without comorbid ADHD (122.66 [2.77]) and controls (127.00 [1.28]). Participants and controls did not differ significantly in movement speed and movement area. Just over 20% of participants with tics fell below the age-predicted norm in striking distractors, whereas fewer than 10% fell outside age-predicted norms in other task parameters. Conclusions: In children with tics (without comorbid ADHD), acting upon both targets and distractors suggests reduced ability to suppress responses to potential triggers for action. This may be related to increased sensorimotor noise or abnormal sensory gating.

Physical activity, sleep and neuropsychiatric symptom severity in children with tourette syndrome.

The purpose of this study was to examine associations between physical activity, sleep and symptom severity in children with tic disorders. Children with tic disorders wore the GeneActiv device, a wrist-worn accelerometer that measures physical activity intensity and sleep/wake parameters continuously for seven days, and completed questionnaires on sleep quality, exercise and severity of tics, ADHD, obsessive-compulsive behaviours, anxiety and depression. 110 children participated in the study. Children with more severe tics had significantly more frequent comorbid diagnoses, greater impairment in subjective sleep measures, greater sedentary activity time and less light, moderate and vigorous activity time (all p < 0.05). There was a significant negative correlation between light, moderate and vigorous physical activity and the severity of tics (- 0.22, p = 0.04), obsessive compulsive behaviours (- 0.22, p = 0.03), anxiety (- 0.35, p = 0.0005) and depression (- 0.23, p = 0.03). There was no correlation between objective sleep time, sleep efficiency and symptom severity. Subjective sleep quality was positively correlated with all symptom severity measures, with the strongest correlation with ADHD severity (0.42, p < 0.00001). The results of this observational study indicate a small, but significant relationship between activity and sleep measures and the severity of the main symptom domains present in tic disorders.

Development of a New Care Pathway for Depression and Anxiety in Adult-Onset Isolated Dystonia.

Background: Recently, we identified barriers and facilitators to the screening and treatment of depressive and anxiety symptoms in adult-onset isolated dystonia (AOID). These symptoms are common, functionally impairing, and often underdetected and undertreated. Objectives: To develop a care pathway for mood symptoms in AOID. Methods: We used a multistep modified Delphi approach to seek consensus among healthcare professionals with experience of AOID on the screening, diagnosis, and treatment of mood symptoms. A combination of face-to-face meetings and online surveys was performed from 2019 to 2020. We created the survey and then reviewed with stakeholders before 2 rounds of Delphi surveys, all of which was finally reviewed in a consensus meeting. A purposive sample of 41 expert stakeholders from 4 Canadian provinces, including neurologists, nurses, psychiatrists, psychologists, and family physicians, was identified by the research team. Results: The Delphi process led to consensus on 12 statements that operationalized a pathway of care to screen for and manage depression and anxiety in people with AOID. Key actions of the pathway included yearly screening with self-rated instruments, multidisciplinary involvement in management involving local networks of providers coordinated by movement disorders neurologists, and access to educational resources. The Delphi panel indicated the 2 core steps as the documentation of the most recent screening outcome and the documentation of a management plan for patients who were positive at the last screening. Conclusions: This new care pathway represents a potentially useful intervention that can be used to build an integrated model of care for AOID.

Exploring the Decisional needs of Parents with Children with ADHD and Disruptive and Aggressive Behaviour.

OBJECTIVE: The aim of this qualitative study was to explore the decisional needs of parents of children with ADHD and disruptive and aggressive behaviour to inform the creation of a patient decision aid. METHOD: A one-day meeting of researchers, community advocacy partners, and 11 parents of children (age range eight to 21) with aggressive and disruptive behaviour associated with a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder or Conduct Disorder was held. This meeting consisted of a two-hour educational session on the assessment and management of aggressive and disruptive behaviour in children and patient decision aids, followed by two concurrent focus groups to determine the decisional needs of parents. NVivo11 software was used for the organization of the data. RESULTS: The results outline the broad themes and subthemes that emerged from the thematic analysis. These themes and subthemes include (a) decisional needs - treatment options and where to begin, availability, effectiveness of different treatment options, side effects, time, depth of information provided; (b) decision aid formats, and (c) accessibility - language, involvement of children, and dissemination. CONCLUSION: The themes generated from the focus groups suggest that a patient decision aid for parents with children with ADHD and disruptive and aggressive behaviour should follow the general recommendations for best practices for the creation of patient decision aids. Specific information on the regional availability of non-medical treatments will be especially helpful for parents to navigate services and service providers. Consideration should be given as to how the concept of values clarification is introduced to families.

OBJECTIF: Cette étude qualitative visait à explorer les besoins décisionnels de parents d'enfants souffrant du trouble de déficit de l'attention avec hyperactivité (TDAH) et présentant un comportement perturbateur et agressif, dans le but de renseigner la création d'un outil de prise de décision pour les patients. MÉTHODE: Une réunion d'un jour de chercheurs, de partenaires de défense communautaire et de 11 parents d'enfants (de 8 à 21 ans) présentant un comportement agressif et perturbateur associé à un diagnostic de TDAH, de trouble oppositionnel avec provocation ou de trouble des conduites a eu lieu. Cette réunion consistait en une séance éducative de 2 heures sur l'évaluation et la gestion du comportement agressif et perturbateur des enfants et sur les outils de prise de décision des patients, suivie de 2 groupes de discussion simultanés pour déterminer les besoins décisionnels des parents. L'organisation des données s'est faite à l'aide du logiciel NVivo11. RÉSULTATS: Les résultats font ressortir les grands thèmes et sous-thèmes qui sont issus de l'analyse thématique. Ces thèmes et sous-thèmes sont notamment (a) les besoins décisionnels ­ les options de traitement et par où commencer, la disponibilité, l'efficacité des différentes options de traitement, les effets secondaires, le temps, l'exhaustivité de l'information fournie; (b) les formats des outils de prise de décision, et (c) l'accessibilité ­ la langue, la participation des enfants, et la diffusion. CONCLUSION: Les thèmes issus des groupes de discussion suggèrent qu'un outil de prise de décision des patients destiné aux parents d'enfants qui souffrent de TDAH et présentent un comportement agressif et perturbateur devrait suivre les recommandations générales des pratiques exemplaires pour la création d'un outil de prise de décision des patients. L'information spécifique sur la disponibilité régionale des traitements non médicaux sera particulièrement utile pour les parents qui cherchent des services et des fournisseurs de service. Il serait bon d'examiner comment le concept de la clarification des valeurs est présenté aux familles.

Effect of diet, exercise and sleep on tic severity: a scoping review protocol.

INTRODUCTION: Tourette syndrome is a common childhood-onset neuropsychiatric disorder, with tics that wax and wane in frequency and severity over time. The purpose of the proposed scoping review is to map the types of evidence available pertaining to the effect of diet, sleep and exercise on tic severity and identify key concepts and gaps in research. METHODS: Our scoping review will use the six-step framework recommended by Arksey and O'Malley, with enhancements from Levac et al and Joanna Briggs Institute. We will attempt to identify all the relevant literature regardless of study design. We will search six electronic databases, the reference lists of all selected studies and the grey literature for studies examining an association between dietary factors, sleep or physical exercise and tics, or studies of interventions targeting diet, sleep or exercise to reduce tics. Our analysis plan includes description of the reported associations among dietary factors, sleep and physical exercise and tics, the effects of interventions, the research methodologies and how outcomes are measured. ETHICS AND DISSEMINATION: An approval from a recognised committee is not required to conduct the proposed review, as the study entails secondary analysis of the literature available publicly. For dissemination of the study, the results will be submitted for publication to peer-reviewed scientific journals and presented at relevant public forums and conferences.