Coeliac Disease is one of the most common immunological diseases of children, thought to affect up to 30,000 Queensland children.
Coeliac Disease is an autoimmune condition caused by a reaction, in susceptible individuals, to the gluten found in food. If untreated, it can result in complications across organ systems of the entire body and problems with children’s growth and development. These children risk failing to achieve their true potential and become socially isolated. The only treatment is a strict gluten free diet which can be challenging and expensive for children and their families. The proper diagnosis and access to effective treatment of coeliac disease is therefore important but can be difficult depending on where you live.
By working with health professionals, children with coeliac disease, and their families, this research aims to co-design a registry and digital passport to help standardise the diagnosis of Coeliac Disease and improve access to personalised tools to manage the disease through childhood and beyond.
The co-design of a digital passport will equip children to be confident navigators of their chronic condition. The project will:
- Identify structural characteristics, networks and communication, culture and implementation climate from the perspectives of general practitioners, paediatricians, dietitians, paediatric gastroenterologists and pathology providers to inform the development of a centralised QLD coeliac disease registry and digital passport.
- Understand the needs, barriers and enablers (social, emotional, and socioeconomic) of parents, young people and children affected by coeliac disease, to inform the appropriate referral diagnosis and dietary therapy adherence taking into consideration the significant geographical and financial barriers to accessing healthcare and implementing gluten-free diet therapy.
It will also help us identify the key “sticking points” that prevent information moving between systems, health professional and families and to hear the voices of children and young adults living with coeliac disease about what they need for ongoing treatment.