IBD Prepare for care
Research type
Research Study
Full title
Are young people with inflammatory bowel disease prepared to make decisions about their care?
IRAS ID
269881
Contact name
Alan Lobo
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS FT
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Inflammatory Bowel Disease (IBD) affects 1 in 350 people in the UK with a rising incidence in young people. Approximately 25% of patients with IBD present before 20 years old, with a peak onset in adolescence. Compared to paediatric services, which commonly cease at 16 in the UK, adult services place a greater emphasis on being an independent autonomous patient with less involvement of the family unit. Self-management, which involves the patient making decisions about care, is a major part of being independent. The acquisition of decision-making skills is an important component of adolescence as increasing autonomy requires making decisions alone. This study aims to assess the decision-making competence of young people with IBD and evaluate whether these young people are adequately prepared to make decisions about their care. A decision-preparedness questionnaire will be distributed alongside additional questionnaires that will assess factors that may affect decision-preparedness. This study will involve participants aged 16-19 with a diagnosis of IBD or Juvenile Idiopathic Arthritis (JIA) and a control group of young people with no diagnosis of a chronic condition. This is so comparisons can be made across the cohorts to try and better understand why young people may or may not be equipped with appropriate decision-making skills and what can influence this ability. Patient demographics including post-code derived deprivation scores, gender, relationship status, educational level, employment status and ethnicity will also be collected in order to assess the impact these aspects may have on decision-preparedness. Semi-structured interviews will be conducted with members of the IBD and JIA cohort in order to explore areas surrounding decision-preparedness not covered in the questionnaires and the reasons for the level of decision-making competence.
REC name
HSC REC B
REC reference
19/NI/0173
Date of REC Opinion
28 Aug 2019
REC opinion
Favourable Opinion