Exploring difficult behaviours in tuberous sclerosis complex: An online survey and telephone interview


This is a study jointly funded by the TSA. Researchers at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham are inviting parents/caregivers of all children aged 4-15 years with tuberous sclerosis complex (TSC) to take part in a study about difficult behaviours.

Why is this research being conducted? We know TSC is associated with increased rates of behaviour difficulties and there may often be clear ‘functions’ to some behaviours (what purpose the behaviour serves for the person showing it). However, some difficult behaviours may not serve a clear function, and are not always easy to fully describe or understand. Behaviours such as temper outbursts and impulsivity for example, are reported frequently in TSC, but are not well understood. As a result, we are interested in finding out more about five difficult but complex behaviours that are prevalent in TSC: temper outbursts, repetitive and inflexible behaviours, non-compliant behaviours, impulsivity and overactivity.

Who can take part?
Parents/caregivers of all children with TSC aged 4-15 years, whether or not they are showing any of the five difficult behaviours listed above.

What will participation involve?
All parents/caregivers are invited to complete caregiver questionnaires on aspects of their child’s behaviour and caregiver well-being, which take approximately one hour to complete. Parents/caregivers who indicate their child shows any of the five behaviours outlined above will be invited to the telephone interview stage, and asked to rate which of the five behaviours are of most concern. The two behaviours rated most highly will be discussed in detail during a telephone interview, lasting approximately two hours. The interview will cover aspects of behaviour such as frequency and severity, and the impact of the behaviour on the individual and their family. In addition, parents/caregivers will complete a telephone interview about their child’s adaptive abilities and specific issues relating to TSC, which will last approximately two hours. Parents/caregivers will receive an individualised feedback report of the outcomes of their child’s assessments.

How do I take part?
Parents/caregivers are invited to click tinyurl.com/jttl6jg to access the information sheet for this study. If you and the child you care for are interested in taking part after reading this information, the consent form and caregiver questionnaires are also available via the above link. The password required on the opening page is cerebra. If your child shows any of the five difficult behaviours listed, the researcher will contact you to arrange a convenient time for the first telephone interview. All telephone interviews can take place over more than one session, at a time that is convenient for you.

Who should I contact to take part/for more information?
If you have any questions about the study, or require further information, please contact the researcher Stacey Bissell via telephone 0121 414 2855 or email SLB085@bham.ac.uk
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