Some sections of this chapter have been reproduced from the ORBIT trial protocol, which has been published.1
The interventions were hosted on BIP, a Swedish web-based research platform that has been specifically designed for use by CYP and their parents, with an age-appropriate appearance, animations and interactive scripts (http://www.bup.se/BIP/). Both the ERP and psychoeducation interventions consisted of 10 chapters, to be completed over 10–12 weeks.
Both the interventions had a ‘child’ and ‘supporter’ component – the child and supporter had separate logins to access their respective interventions. The content that the supporter accessed reflected/aligned with the content in their child’s intervention. Both the child and supporter received remote access from a therapist via the BIP platform. Please note that the term ‘supporter’ was used in both interventions to reflect the child’s caregiver involved in the trial. This typically meant their parent but could also mean another caregiver.
Exposure with response prevention intervention
The ERP intervention was based on ERP techniques with functional analyses and social support. The first case study of ERP was reported in an adult by Bullen and Hemsley.48 Since then, ERP for tic management has been shown to be effective in children and adults.16,43,49 ERP as a component of BT for tics has also been advocated within the recently published European guidelines for psychological interventions for tics.11
Most children can relate to a pattern of feeling a premonitory urge (a sensation that lets them know a tic is coming), which causes a tic and then results in relief. Over time, this pattern results in a negative reinforcement cycle that helps to maintain the tics. The ERP model serves to disrupt this cycle. During the initial phase of treatment, participants are instructed to practice suppressing their tics: this is known as ‘response prevention’. Then, with the help of another person, typically a therapist or carer/parent, the participant is instructed to provoke premonitory urges and control the need to express the tic: this is known as ‘exposure with response prevention’. The child feels the urge and does not respond, and so the cycle between urge, tic and relief is broken. There are various hypotheses on why ERP breaks the pattern and results in reduced tics. Previously, it was thought that habituation to the premonitory urge occurs and therefore the urge reduces,50 as do the tics. More recent research has suggested that for many individuals the urge remains despite not expressing the tics.51,52 It may be that, similar to changes in cognitions in anxiety during treatment following extinction learning,53 the tic is evaluated differently, and previous cognitions such as ‘I dislike or fear the urge/I cannot control my tics’ are disproven, and, with practice, the child becomes more effective at controlling their tics and tolerating the urge. The basic ERP technique described in the ORBIT treatment is drawn from a published manual for face-to-face treatment for children.54 However, the intervention has been successfully adapted for delivery in different formats including group-based treatment55,56 and therapist-supported online self-help.43
The Swedish team did an in-house translation of all the ERP intervention content (text from chapters, scripts for videos) from Swedish to English and shared this with us as MS Word documents. This content was reviewed and edited by E. Bethan Davies and Tara Murphy for clarity and to keep relevant terminology consistent and understandable within an English context. The chapter content is described in Table 1.
| Chapter | Child intervention | Parent/supporter intervention |
|---|---|---|
| 1 | Learn about tics Introduction to ERP, learn about different types of tics and child asked to think about tics they have | Introduction Introduction to ERP, learn about their role as supporter in intervention and how to use a credit and reward system for child’s practice |
| 2 | More about tics Child learns about tic signals (premonitory urge), creates a list of their own tics and ranks how personally bothersome the tics are for them | Thoughts and behaviours of supporters Supporter learns about tic signals (premonitory urge), learns about importance of not commenting on tics, common thoughts and feelings parents/caregivers have about their child’s tics and how emotions are linked to behaviours |
| 3 | Practising stopping your tics Child learns about how to gain some control of tics via tic signal and ERP practice, how their supporter will help them do this and how to use tic stopwatch within the programme to practice ERP | Praise Supporter learns how to support their child with ERP practice, the importance of providing praise with practice and how to prompt their child to engage with ERP practice |
| 4 | Making the practice more challenging Child learns how to increase tic signals (premonitory urge), how to practise in different situations/places and to use tic stopwatch to practice in different situations/places | Prompts Parent/supporter learns effective ways to prompt and encourage their child with ERP practice and to plan specific times to do ERP practice |
| 5 | Continued practice Child to continue doing ERP practice and to heighten their premonitory urge for practice | Situations and reactions Supporter learns about changing situations that impact frequency of tics, about changing their reactions that may trigger tics and about influence of external factors in maintaining tics |
| 6 | School Child learns about how tics may interfere with school and strategies they could use in school to help with tics. Child is asked if they can talk to their teacher about their tics and learns about bullying, if they are affected by it and to talk to an adult if so | Troubleshooting Supporter learns to solve potential problems they may face in ERP, which areas to focus on if child’s ERP practice is not going as well as intended and to contact child’s school about tics (if appropriate) |
| 7 | Talk about your tics Child learns to talk to other people about their tics; they will write an explanation about tics that they can use to tell other people; optional task to tell their class at school about tics | Continued practice Supporter reviews all strategies learnt so far and to evaluate how they feel their child’s ERP practice is progressing |
| 8 | Continued practice Child to continue doing ERP practice in different situations/places | Continued practice Supporter to assist child in doing ERP practice as much as possible |
| 9 | The final sprint Child to learn/plan how to manage tics once ERP finishes and to decide what is most important for them to focus on in future practice | Continued practice Supporter to continue assisting child in doing ERP practice and to highlight key areas to focus on in remaining treatment |
| 10 | Plan for the future Child to make plan on how to continue working on tics in future, asked for feedback on what they liked and did not like about ERP and asked for feedback on what aspects of ERP they found helpful | Plan for the future Supporter to make plan on how to work with child to continue working on tics in future, asked to review information learnt in ERP and asked for positive and negative feedback about ERP |
Psychoeducation intervention
Psychoeducation about tics has been shown to be useful for improving the knowledge and attitudes of children with tic disorders and other people around them.57 Research suggests helping carers develop positive attitudes and expert knowledge on tics can help them support the individual with the condition to better manage their tics and associated symptoms. Psychoeducation has been used as a comparator in several RCTs in tic interventions to date.17,58–60
The psychoeducation content was created in-house by Tara Murphy and E. Bethan Davies. This consisted of psychoeducational information about TS and co-occurring conditions (chapter contents are described in Table 2). Information and activities ranged from reviewing the definition of tics, natural history, common presentations and co-occurring conditions, prevalence, aetiology, risk and protective factors and strategies for describing tics to other people. Development of expertise and a positive perspective on tic disorders were emphasised. The psychoeducation chapters included strategies for promoting positive behaviours that are rewarded by a carer or parent as a parallel element to the tic control practice in ERP. There was no information on tic control within the psychoeducational intervention. The material for psychoeducation was modified and adapted from the supportive psychotherapy intervention for children, used within the RCT to evaluate CBIT17 and relevant self-help psychoeducation for parents.61
| Chapter | Child intervention | Parent/supporter intervention |
|---|---|---|
| 1 | Learn about tics Introduction to psychoeducation, learn about different types of tics and child asked to think about tics they have | Introduction Introduction to psychoeducation, learn about their role as supporter in intervention and how to use a credit and reward system for child’s engagement with psychoeducation |
| 2 | Tics and tic list Child learns about tic signals (premonitory urge), creates a list of their own tics and ranks how personally bothersome the tics are for them | Praise Supporter learns how to support their child with psychoeducation and how to prompt their child to engage with psychoeducation |
| 3 | Learning about tics Child learns more information about tics and how their supporter will help them during the next phase of psychoeducation | Prompts Parent/supporter learns effective ways to prompt and encourage their child to use the new knowledge they have learnt in psychoeducation |
| 4 | More than tics Child learns about common comorbid conditions and other challenges that occur with tics and to practice their research skills through finding out information about a chosen comorbid condition | More than tics Supporter learns about common comorbid conditions and other challenges that occur with tics and to think about whether any of these conditions affect their child |
| 5 | Healthy habits Child to learn about healthy habits, including habits they already do, and whether they can put any more into practice | Healthy habits for your child Supporter learns about healthy habits to ensure their child is as strong as possible to cope with their tics and to think of daily routine changes for their child to help with tic management |
| 6 | School Child learns about how tics may interfere with school and strategies they could use in school to help with tics. Child is asked if they can talk to their teacher about their tics and learns about bullying, if they are affected by it and to talk to an adult if so | School Supporter learns to solve potential problems they may face in psychoeducation, which areas to focus on if child’s engagement with psychoeducation is not going as well as intended and to contact child’s school about tics (if appropriate) |
| 7 | Talking about tics with your class Child learns to talk to other people about their tics; optional task to tell their class at school about tics | Thoughts and behaviours of supporters Supporter learns about tic signals (premonitory urge), about importance of not commenting on tics and common thoughts and feelings parents/caregivers have about their child’s tics |
| 8 | Risk and protective factors Child learns about risk and protective factors in relation to tics and about resiliency in relation to tics | Risk and protective factors Supporter learns about risk and protective factors for tics and to identify factors that may help their child cope better with their tics |
| 9 | Tics and the future Child learns about some recent research about tics and about what happens to tics and coexisting conditions as people get older | Looking after yourself Supporter reviews all strategies so far and learns about ways to look after themselves so they are able to support child as best they can |
| 10 | Plan for the future Child to make plan on how to continue working on tics in future, asked for feedback on what they liked and did not like about psychoeducation and asked for feedback on what aspects of psychoeducation they found helpful | Plan for the future Supporter to make plan on how to work with child to continue being educated on tics in future, asked to review information learnt in psychoeducation and asked for positive and negative feedback about psychoeducation |
The role of the therapist
Patients had regular contact with a therapist during the 10-week period via messages that could be sent inside the treatment platform (resembling an email). The therapist could directly comment on exercises that the patient had been working on and give specific feedback to motivate the patient. The patient typically had contact with the therapist at least once a week. The therapist role was to support the participant in completing the intervention; they did not deliver any therapeutic content and were not trained in how to deliver BT. Key tasks included troubleshooting, technical support and promoting engagement with the intervention.
If necessary, it was possible to allow the therapist-guided treatment to be given over a 12-week period if the therapist only offered support for a maximum of 10 weeks during the 12-week period. This may have been needed if the participant was unable to engage with the ORBIT treatment for reasons such as holidays, exam periods, illness or bereavement. Access to the BIP system was granted for 1 year.
If any circumstance occurred meaning that the child was unable to log in and access the ORBIT treatment for 5 days or more, therapist support and access to the intervention were paused for that week, until the child was able to fully engage in the treatment again. Treatment and therapist support could be paused for a maximum of 2 weeks. Therapists consulted with the trial manager and their clinical supervisor in these cases.
During the screening/baseline assessment (prior to starting the therapy), participants were introduced to the therapy platform and, where possible, met their therapist. During the treatment, the participants received remote contact with this therapist via an in-built text message function in the system (similar to an email); at the same time, an SMS reminder was delivered to their phone through the BIP system each time they received a new message from their therapist inside the BIP platform. Phone calls to the family were made when the participants/therapists felt it was necessary. Therapists logged in to the system to provide the participants with feedback, answer questions or remind them to complete the next chapter/module if required. The amount of contact the therapist had with the family was determined on an individual basis as the therapist deemed necessary. Any phone calls made outside the BIP system were not logged in the BIP system but recorded manually in a data file. All therapist activity was logged in the system. Additionally, therapists kept their own log of contacts in an Excel file. This file allowed them to keep track of when a chapter/module was opened to check progress and provide a brief log of messages/contacts with the family. The therapists were able to log in at least every 48 hours of a working week but were advised to log in daily to check for messages/inactivity.