Process Evaluation of the Online Remote Behavioural Intervention for Tics (ORBIT) trial

Posted Mon 15th Jul 2019 at 06:00
by Kareem Khan

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Kareem Khan is a PhD researcher at the Institute of Mental Health in the University of Nottingham. He has worked for many years with a range of disorders at various psychiatric/neurology hospitals and clinics, including a Movement Disorders clinic in London. Along with his supervisor Professor Cris Glazebrook, they are carrying out a process evaluation of the ORBIT trial for young people with Tourette Syndrome (TS) or Chronic Tic Disorder (CTD). To do this, they aim to interview around 40 young people and their supporters who participated in the ORBIT trial to find out about their overall experience of the study. Here Kareem explains more about his PhD research and his experience of working with TS.

If you are a member of Tourettes Action and frequent this website often then you may have heard of the ORBIT trial by now. Tourettes Action have done a great job in promoting this very important study. In brief, ORBIT aims to offer better access to behavioural treatments for children and young people with TS. Based on a Swedish study, ORBIT is evaluating whether an online, remote, therapist-assisted, parent-aided behavioural treatment following the principles of exposure response prevention is effective for young people with TS or CTD.

My role on ORBIT is to carry out a process evaluation, which essentially looks at whether or not the treatment was effective, if so, how and for whom in particular. I have been interviewing the young people and their supporters who took part in ORBIT to get their overall experiences of the trial and the treatment and have assessed potential participants at Queens Medical Centre in Nottingham. So far, the feedback has been very positive but I am keen to hear from those who participated in ORBIT who did not engage well with it or did not find it helped them. This is so that we can improve the treatment for future use with the ultimate aim being to implement this treatment to everyone on the NHS.        

Like most people, my only experience of TS (pre-ORBIT) had been watching the kind of documentaries they show on Channel 4 at 9pm on a Thursday following one or two people with extreme versions of TS who swear constantly to general hilarity to those around them and the majority of the viewing public. In fact, TS is far more complex than that and is definitely not hilarious to those that have the syndrome or to their families.

I am now a year and a bit into my PhD and the experience of working with young people with TS and their families has been invaluable. Many of these kids are inspirational. They suffer from bullying at school, being shunned by their peers, ticcing constantly causing fatigue, and saying things to people that they don’t mean to say. All of these things have a profound impact on the child’s self-esteem and quality of life and causes them a great deal of sadness, embarrassment and so on. Despite this, many of these kids still try to enjoy life and smile through it all. That to me is inspiring.

If you have participated in the ORBIT trial and have not yet been interviewed about your experiences then please do contact Kareem (kareem.khan@nottingham.ac.uk) to arrange a suitable day and time. The interview lasts around 30 minutes for each person and can be conducted on the phone or by WebEx.  

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