Coeliac Disease: Psychological impact and barriers to adherence
Research type
Research Study
Full title
An exploration into the psychological impact of coeliac disease and barriers for dietary compliance in preadolescents and adolescents
IRAS ID
307980
Contact name
Louise Maclean
Contact email
Sponsor organisation
Leeds Teaching Hospitals Trust
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
This study aims to gain greater understanding of the psychological impact of coeliac disease on children, young people and their families and to recognise barriers they face adhering to a gluten-free diet. Coeliac disease is a chronic, autoimmune disorder that can cause symptoms such as diarrhoea and abdominal pain (Gujral, 2012) as well as longer term issues such as faltering growth and nutritional deficiencies. The management of coeliac disease is therefore increasingly important in childhood and adolescence to avoid issues with growth and development. Management is largely centred on eating a gluten-free diet, but adherence to this can range widely (Hill, Austin, Forsyth & Holmes, 2014). Previous research has also found that the disease can also negatively impact quality of life, social and emotional factors, particularly in adolescence (White, Bannerman & Gillet, 2016).
Pre-adolescents and adolescent patients (aged 8-18years) attending the Paediatric Coeliac Outpatient clinic at LTHT will be invited to take part in the study, along with their parent(s)/caregiver(s). Patients will be invited to complete a three-part questionnaire that looks at the experience of living with coeliac disease and the barriers they face to eating a gluten-free diet and how these factors may interact. Parent(s)/caregiver(s) will also be given a separate survey focusing on how they are coping with day-to-day living with their child’s coeliac disease and gluten-free diet. These surveys will only take around ten minutes to complete. This research aims to gain a richer understanding of the impact and experience of coeliac disease both on young people diagnosed with the condition and their family. Understanding the association between its impact on wellbeing and quality of life and the potential barriers to eating a gluten-free diet will help to implement further development of the service to provide effective and appropriate support and education.References in scientific justification.
REC name
London - Bromley Research Ethics Committee
REC reference
22/PR/0238
Date of REC Opinion
5 Apr 2022
REC opinion
Further Information Favourable Opinion