Click here to download the advertisement flyer for this study.

An Evaluation of a Classroom Presentation about Tourette Syndrome

RESEARCHER: Claire Nussey, Trainee Clinical Psychologist, University College London

DETAILS: It is recommended that providing information about Tourette Syndrome (TS) to other people can be helpful for children with TS. Tourettes Action has produced presentations about TS for this purpose. This study aims to evaluate the effects of the teacher presenting the primary school version in the classroom from different people’s perspectives. We are interested in finding out about the experiences of the child with TS, their parent, their teacher and their classmates.

We are hoping to recruit 4-6 children with TS aged approximately 9-11 years and their parents. To take part you should be thinking that a classroom presentation about TS might be helpful to your child. We will also be asking your child’s teacher and classmates to take part in the study. In the study, the classroom presentation will be given by the teacher, and your child can have as much or as little involvement with this as they wish.

If you are a parent or teacher of a child with TS and might be interested in taking part, or you would like to find out more information, please contact Claire Nussey. Please provide a contact telephone number.

Contact details:

Claire Nussey

Trainee Clinical Psychologist

University College London

Email: c.c.nussey@googlemail.com

Telephone: 07939 287020



Too much or too little of these proteins in the brain could turn out to have a role in many human neurodevelopmental disorders and Tourette Syndrome, says the lead researcher, Associate Professor Robert Burgess. ‘What these disorders share is that there's nothing really grossly wrong with the brain - all the major parts are there and are more or less connected the way they should be, with some minor abnormalities’, he says. Now scientists can begin to investigate these proteins effect in other animal models, and humans, to see if they work the same across species.

Tourettes Action's Honorary Medical Director Dr Jeremy Stern commented that this is an interesting study but any impact on Tourette Syndrome would be in the future.

 
For a link to the original paper, see http://www.cell.com/neuron/abstract/S0896-6273%2809%2900738-7.

For a press release from the Jackson Laboratory about this study, see http://insciences.org/article.php?article_id=7783.

 

Below are details of a study at Anglia Ruskin University. The researchers are looking for children aged between 7-17 years of age.

Please note that the study is designed to looked at reading and is not designed to look at the severity of TS symptoms (e.g. tics).

RESEARCHER: The Principal researcher is Dr Amanda Ludlow, Senior Lecturer in Psychology, Anglia Ruskin University, Cambridge. This is being done in collaboration with Dr Peter Allen (an optometrist), Anglia Ruskin University and Professor Arnold Wilkins, Essex University.

DETAILS: Many children experience symptoms of ‘visual stress’ when reading. This includes distortions in text and eye strain. Placing a coloured overlay on top of a page whilst reading has proven beneficial in reducing visual stress and increasing reading speed. Non-verbal visual search skills have also been found to improve when a coloured overlay is used. 20% of the general population are thought to benefit from these coloured overlays, showing a 5% increase in reading speed when one is used. The benefits of such overlays, however, have been found to be greater in various sub-populations. These include individuals who suffer from migraines, photosensitive epilepsy, those with dyslexia and those with autism.

Research has yet to examine the effects of coloured overlays on reading ability in children with Tourettes. We hope that the study will address whether children with tourette syndrome also suffer from visual stress and thus may show an improvement in reading with an overlay. The experimental session will take no longer than 25 minutes to complete. The research your child is invited to take part involves three very easy tasks including both a reading and emotion identification task. The study will take place at the Psychology Department at Anglia Ruskin University Cambridge. Children will be paid £10 for their time and all travel cost can be reimbursed.

If you are interested in participating in this study, or you have any questions about this study, please contact the researcher directly by email (amanda.ludlow@anglia.ac.uk) or by phone on 0845 196 2418 (office) 07722 817126 (mobile).

To read more about the project, please click here.

Last spring Tourettes Action helped recruit members with Tourettes syndrome for a Quality of Life research study by Bibiane Gomes. Bibiane Gomes is an MSc student in Psychological Research Methods at The University of Westminster in London. Her Masters’ project which now is completed was a study of the impact of different co-morbidities on Quality of Life in adults with Tourette syndrome. Bibiane collaborated with Dr Andrea Cavanna from The Tourette Clinic in Birmingham (Queen Elizabeth Psychiatric Hospital), who previously developed the Tourette specific scale she was using to assess the QOL in our members. Her study showed that depression and tic severity, but not anxiety, OCD or ADHD affected Quality of Life negatively in this sample of people with Tourettes syndrome. We asked Bibiane to explain her findings further.

What was the purpose of the study?

This study aimed to investigate the QOL in TS specifically the extent to which tic severity and co-morbid disorders such as obsessive-compulsive disorder (OCD), depression, anxiety and attention deficit hyperactivity disorder (ADHD) relate to QOL in a sample of adults with TS.

Who participated?

46 adults with TS who are members of Tourettes Action - UK and Tourette Scotland participated in the study. They completed questionnaires which assessed the impact of OCD, anxiety, and ADHD on QOL for people with TS. Of the 46 participants, 30 were males and 16 were females. Adults ranged in age from 20 to 75 years. 

Why is this study important?

This was the first study to measure QOL in TS using a specific health-related QOL instrument (GTS-QOL scale) designed to assess the complex characteristics of TS. Tic severity and OCD were assessed with The Motor tic, Obsessions and compulsions, Vocal tic Evaluation Survey (MOVES). Other scales included The Hospital Anxiety and Depression (HAD) scale, which screened anxiety and depression, and The Adult ADHD Self-Report Scale (ASRS v1.1) Screener, measuring attention deficit hyperactivity disorder.

What did the study show?

The results from the study showed that depression and tic severity strongly affects QOL in this group of people with TS but that OCD, anxiety and ADHD did not affect their QOL.

What do the results mean?

These results mean that depression and tic severity has an impact on the lives of adults with TS. In conclusion, this study emphasises the impact of tic severity and co-morbid disorders on the QOL of adults with TS. The findings may help professionals in this area to manage Tourettes better when providing treatments and interventions by addressing these issues.

The full report can be downloaded from here.

The survey was sent out to 549 people who had requested the Consultants’ List from us during the past year. 68 of them completed the survey.

Surprisingly, more than half of those who sought referral from their GP did not receive it (54%, see figure below). Of the 25% who did end up seeing a consultant from the list, the majority said that the waiting time for an appointment was 3 months or less. 6% of those who had received referral from their GP however had to wait 6 months or more for an appointment.

The main reason for not seeking referral after having received the list was because other, local services  instead were chosen. The second most common reason for not seeking referral was because no consultant on the list was near enough. Other reasons for not seeking referral were lack of time, because requested information was just being passed on to someone else, or because the symptoms had subsided since having received the list.

Since last year’s meeting of the European Society for the Study of Tourette Syndrome (ESSTS), the Society has assigned four working groups with TS experts to review the following areas; Assessment, Investigation, Pharmacological management, Psychological therapies and Deep Brain Stimulation, with the future aim to produce a European Clinical Guidelines for TS. Representatives of these working groups gave presentations in Budapest on their progress. The European TS Clinical Guidelines would be streamlined across countries as much as possible, and also serve as the inclusion criteria for new countries who wish to join the network.

An update from the new so called TSGeneSEE project (The Southern and Eastern Europe TS genetics Initiative) was also on the agenda, and a presentation about this was given by Dr Perry Paschou from Democritus University in Greece. The project is funded by the Tourettes Syndrome Association USA and involves 7 countries. Blood samples of patients with TS are sent from these countries to a research centre in Greece for further genetic analysis, to try and identify genes which could be involved in TS.

The delegates discussed further how to secure funding for European collaborative research and projects such as the Clinical Guidelines and a European Case Registry. It was also announced that there will be a Streptococci workshop for consultants and researchers in London on 22-23 October, funded by the European Science Foundation. The next ESSTS meeting will be held sometime next spring.

This study is aimed at adults who have severe Tourette syndrome and who have found that conventional treatments, such as drugs, do not control their symptoms sufficiently or cannot be tolerated. Patients will be recruited from dedicated Tourette clinics in London and Birmingham.

Entry criteria are as follows;

1) The participant must be adult with stable Tourette syndrome.

2) The participant must have a chronic and severe tic disorder with severe functional impairment, with a Yale Tourette Severity Scale score of at least 35/55 for at least 12 months prior to surgery.

3) The participant must have failed conventional medical treatment at therapeutic doses of three classes of medication.

4) The participant must not be suitable for behavioural intervention or that this intervention is inappropriate or unsuccessful.

5) The participant must have been on stable and optimised treatment of co-morbid conditions for at least 6 months.

6) The participant must be actively involved with and compliant with any psychosocial interventions.

Exclusion criteria are:

1) The tic disorder is attributable to any other condition.

2) Any other disorders that substantially increase the risk of a failed procedure or that would significantly impede recovery.

3) Psychosocial factors which might impede operative and post-operative care and research participation.

4) Pregnancy.

5) Participant under 20 years old.

If you want to participate in this trial, please contact:

Chief Investigator:

Dr Hugh Rickards

Consultant Neuropsychiatrist

Department of Neuropsychiatry

Birmingham and Solihull Mental Health NHS Foundation Trust

The Barberry

25 Vincent Drive

Birmingham B15 2FG

United Kingdom

Email hugh.rickards@bsmhft.nhs.uk

Tel 0121 301 2316

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