Parental perspectives on gluten immunogenic peptide urine testing in children with coeliac disease: a qualitative study on barriers, emotions and interest in point-of-care tools

Objective Coeliac disease (CD) requires strict lifelong adherence to a gluten-free diet. Gluten immunogenic peptides (GIPs), detectable in urine, offer an objective measure of gluten exposure and may be useful as a point-of-care tool (PoCT). Despite technological advances, clinical guidelines have advised caution owing to insufficient evidence and a lack of patient perspective in existing literature. Our aim was to explore parental perspectives, lending a voice to participants’ experiences with collecting urine for the measurement of GIP and gauge interest in the use of home-based GIP PoCT.Methods This single-centre qualitative study explored parental perspectives on children’s experiences with urine sample collection for GIP testing in a model 3 hospital in Ireland. Semi-structured group interviews were conducted with parents (n=10) of children previously involved in GIP research. Thematic analysis was employed to identify recurring themes regarding sampling barriers, emotional responses and interest in future use of GIP PoCT.Results Four main themes emerged: (1) practical and emotional barriers to urine collection, (2) the clinical environment’s influence on the child’s emotional state, (3) parental enthusiasm for home-based PoCT and (4) suggestions for how to improve interactions with the clinical environment. Minor themes included misunderstandings around sampling instructions, embarrassment and environmental stress as challenges. However, they expressed strong interest in using GIP PoCTs periodically, especially during dietary training phases or after suspected gluten exposure.Conclusion Parents recognise GIP PoCTs as valuable adjuncts to managing CD in children, particularly when integrated with education and supportive care. Future directions should prioritise child-friendly test design, user-centred education materials and inclusive research that captures children’s direct perspectives.