Wellbeing in Young People with Epilepsy

• Research type

  Research Study

• Full title

  Improving the psychological wellbeing of young people with epilepsy: A feasibility study

• IRAS ID

  189130

• Contact name

  Roz Shafran

• Contact email

  r.shafran@ucl.ac.uk

• Sponsor organisation

  Great Ormond Street Hospital for Children NHS Foundation Trust

• Duration of Study in the UK

  1 years, 0 months, 1 days

• Research summary

  Epilepsy is the most common brain illness in young people. We know that young people who have epilepsy are more likely to have other difficulties like anxiety, low mood or behavioural problems. These problems can affect the young person's overall health and quality of life. However, these types of difficulties are often neglected in this population. Effective treatments for mental health disorders such as anxiety, low mood and behavioural problems in young people without epilepsy have been developed and this research ultimately aims to investigate whether these treatments are also effective in those without epilepsy. To do this, the planned methods for such an investigation need to be feasible. This project is a feasibility study to estimate key factors required to design the main study. In particular, it will assess:
  -Recruitment rates
  -Willingness of participants to be randomised
  -Willingness of clinicians to recruit participants
  -Time needed to obtain consent, collect and analyse data
  -Completion rates for the measures
  -The nature of treatment as usual

  Summary of study results:

  236 parents agreed to take part in the initial screening, of whom 229 completed the SDQ. The mean total difficulties score of the sample was 16.39 (SD=7.52) and impact score was 3.7 (SD=3.37). A total difficulties score of 16 is considered to be within the slightly raised range and 17 is considered to be within the high range. An impact score of 3 or more is considered to fall within the very high range. 120 of SDQs (52% of those completed) met threshold for continuation, of which 94 consented to the full study and 47 (39% of eligible SDQs) went on to complete the diagnostic assessment. Of the 47 completed diagnostic assessments, 29 (61.7% of those completed) met full criteria for a DSM5 Disorder, and a further 3 possibly met diagnostic criteria. All participants found the study acceptable.

  236 parents agreed to take part in the study. The Strengths and Difficulties Questionnaire (SDQ) is an emotional and behavioural measure that was used to help decided which participants were suitable to take part in the study which resulted in a sample of 229 parents. The mean total difficulties score of the sample was 16.39 (SD=7.52) and impact score was 3.7 (SD=3.37).

• REC name

  London - Surrey Research Ethics Committee

• REC reference

  15/LO/1881

• Date of REC Opinion

  9 Nov 2015

• REC opinion

  Favourable Opinion