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

Abstract

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.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Gluten immunogenic peptides offer a potential objective biomarker for recent gluten ingestion measured in urine, though recent guidelines have advised about insufficient evidence to support their use in clinical practice to date. This advice, however, does not acknowledge the patient’s perspective.

WHAT THIS STUDY ADDS

• This novel study addresses the patients’ perspective through a semi-structured interview and has identified how guidelines fail to address this gap.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• Through an emergent narrative medicine approach, seeking patients’ opinions and involving them in shaping guidelines and treatment options may improve patient outcomes.

Introduction

Coeliac disease (CD) is an immune-mediated enteropathy triggered by the ingestion of gluten in individuals who are genetically susceptible. It is characterised by small intestinal villous atrophy and the presence of disease-specific antibodies such as anti-tissue transglutaminase and anti-endomysial antibodies.^{1 2} The global prevalence of CD ranges from 0.5% to 1%, with higher incidence in Western countries and a female predominance of approximately 2:1.^3–5 Two peak periods of diagnosis are commonly reported: early childhood and the second to third decades of life.⁶

Adherence to a strict, lifelong gluten-free diet (GFD) remains the only effective treatment for CD, leading to symptom resolution and mucosal healing. However, mucosal recovery may take up to 2 years in children and up to 5 years in adults.^7–9 Non-compliance with the GFD can result in persistent symptoms, mucosal damage and an increased risk of complications such as osteoporosis and infertility^{10 11}

Gluten immunogenic peptides (GIPs) are fragments of gluten that are resistant to gastrointestinal digestion and can be detected in faeces and urine. Their presence provides an objective biomarker for recent gluten exposure. Studies have demonstrated that urinary GIP detection can identify dietary transgressions within 24 hours and may correlate with mucosal healing.^{12 13}

Despite its potential, routine GIP testing is not currently recommended in clinical practice. The American College of Gastroenterology has cited insufficient evidence and a lack of patient input in their guidelines: “the patient perspective was not evaluated during guideline development”. Nevertheless, certain patient populations may derive benefit from GIP testing, particularly as a tool for promoting dietary adherence and patient empowerment.¹⁴

This study aimed to explore the lived experiences of parents whose children participated in urine GIP testing. The objectives are to identify perceived barriers to urine sample collection, emotional responses associated with the clinical environment and attitudes towards the implementation of GIP point of care test (PoCT) as part of CD management in paediatric populations. We aim to learn from participants about what improvement can be offered, as often participants’ opinions are underrepresented.

Methods

This single-centre qualitative study used a semi-structured interview format, conducted over 6 months through secure video-conferencing platforms. The semi-structured interview format uses an open-ended questioning approach compared with the closed-ending questioning approach in questionnaire surveys. This open approach allows further understanding of the subjective perspective, that is, the patient’s opinion regarding the personal use of GIP. The interview questions administered are presented in the online supplemental material. Participants were parents of children previously involved in research that included GIP urine testing.

Participants

Parents were purposively sampled from a cohort of families who had previously been involved in using GIP in clinical follow-up in a single model 3 hospital. The interviewer had not previously interacted with the participants other than recruitment and explained the purpose of the interview. Parents, as opposed to their children, were asked to participate given the variety of ages of the children who provided urine samples and who may have been too young to recall the experience. Groups comprised 1–3 participants per session. Parents were included based on their previous participation and consent in studies of GIP involving urine sample collection. There were no specific exclusion criteria precluding their participation, as we wished to obtain insight into their participation experience. Children were not interviewed.

Data collection

Interviews were conducted from a single research site via teleconferencing by a single interviewer over a 6-month period from June to November 2023 using a semi-structured guide. Interview groups involved 2–4 individuals as scheduling allowed. Pilot-testing was not performed, and serial interviews were not conducted. Topics addressed included understanding of urine collection methods, child emotional responses and perceived usefulness of PoCT. Sessions lasted 20–45 min, were audio-recorded with verbal consent, transcribed verbatim and anonymised for analysis. A single interviewer was used to limit inter-interviewer variability.

The semi-structured interview guide was developed following a lengthy researcher discussion based on the technical aspects of involvement and seeking overall feedback from participants. Non-participants were not present during the recorded sessions to facilitate anonymous feedback. Transcripts were not provided to participants for comment.

Data analysis

Themes were derived from participants’ responses. Thematic analysis was used to analyse the transcripts. Data were coded inductively and discussed iteratively by the research team to identify major and minor themes. Thematic saturation was considered achieved when no new information emerged from subsequent interviews. The reporting of this study follows the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines; the completed COREQ checklist is provided as an online supplemental file.

Results

Participant overview

A total of 19 parents were invited via telephone, of whom two withdrew and seven failed to attend scheduled sessions. 10 parents, ultimately all mothers, participated in the study, sharing perspectives on the experiences of 14 children who had previously taken part in urine sample collection for the measurement of GIPs. Characteristics are summarised in table 1.

Table 1. Participant characteristics.

Characteristic	Description
Number of parent participants	10 (all mothers)
Number of children discussed	14
Median child age	7 (3–15) years
Sex distribution	Predominantly female children (n=11 girls)
Diagnosis duration	Mixed: newly diagnosed to 2+years
Recruitment setting	Participants in prior GIP follow-up

GIP, gluten immunogenic peptide.

Children’s ages ranged from toddlerhood to early adolescence, with a median age of 7 years. The majority were reported as fully continent, which influenced the ease of sample collection. Interviews were conversational to facilitate building rapport without reinterview. To ensure participation in group interviews, each participant was addressed in turn. The latter portion of group interviews was less structured to allow participants to provide reflections and personal comments and facilitate improved conversation flow.

Emergent themes

Thematic analysis identified four central themes arising from direct questioning: (1) barriers to urine sampling, (2) emotional responses to clinical environments, (3) parental interest in GIP PoCT and (4) suggested improvements to support participation. Further minor themes were identified and explored.

Barriers to urine sampling

Parents reported difficulty in explaining the concept of a ‘mid-stream’ urine sample to their children or drew from their experiences of providing urine, acting as a role model. Furthermore, they expressed confusion around the required urine volume and suitable containers.

Embarrassment, especially related to missed attempts or spillage, and performance anxiety was also common, particularly among adolescents. During puberty, the difficulties evolve to include overcoming the social dynamic including allowing a child to have their own space and collecting urine themselves. The practical burden was compounded for families living far from the hospital.

Parents repeatedly retold stories of becoming creative. Using a larger container, like a jug, where there is less mess (“urine sample bottle is fiddly and requires good hand-eye coordination”) created less hesitation around providing the sample. In addition, reassuring the participants that they would not be penalised for being unable to provide a sample immediately or for making a mess proved helpful in urine sample collection.

Parents found that establishing a routine, either first thing in the morning or with the last urination of the day, helped mitigate anticipatory stress and performance anxiety.

Two participants recalled that they received advice regarding sample storage when samples could not be delivered directly to the hospital. They were grateful for this advice because it provided flexibility to their participation in research.

Emotional responses to clinical environments

Children’s discomfort in clinical settings was frequently described (“The environment was loud and intrusive, and it raised her stress levels”). Parents reported heightened anxiety due to unfamiliar surroundings, loud noises (eg, other distressed children) and the pressure of unfamiliar procedures. Unseen delays in collecting urine in a clinical environment were associated with the feeling of being a burden to the service or to the doctor, creating further ‘stage fright’ (“The environment should be comfortable and a safe place without the pressure of performing”).

Negative experiences appeared to have a lasting impact, contributing to anticipatory fear in future visits. Conversely, familiarity with staff, calm environments and gentle explanations were noted to improve comfort.

In one interview, a participant described stories that got her daughter to laugh, which helped provide a distraction for her daughter in an unfamiliar or intimidating environment. The mother recalled an experience in the emergency department when they were unable to obtain a urine sample from her daughter, during which her daughter “ran around the room without a nappy…. weeing on the floor everywhere”, to ease the stress of getting a urine sample for research and normalise it for her daughter. She explained that “it was a funny situation to tell her and she didn’t have to think it was the first ever time she had to do it. Just try and keep it easy breezy, have a giggle about it, because the minute mom or dad is stressed everything jams up”.

It was highlighted that healthcare professionals working in the clinical environment may take for granted how disconcerting the clinical environment can be. Introductions and patience in such interactions are paramount, as they can leave a lasting impression on children and influence how they interact with their illness in the long term. One parent described how the doctor failed to introduce themself or take the time to ease her child’s apprehension, which this parent felt ultimately contributed to a negative experience for her child.

Parental interest in gluten immunogenic peptide point-of-care tool

Parents were ultimately unanimous in expressing their interest in a potential GIP PoCT for use at home (“yes, that would be great!”). They highlighted its utility as a training tool following diagnosis, for reassurance when symptoms arose and for assessing dietary compliance in cases of accidental gluten exposure. Periodic use (eg, every 2–3 months) was suggested to monitor adherence and provide peace of mind, particularly in asymptomatic children or those with vague symptoms (“Symptoms usually just tiredness”). This interest is not reflected in the latest guidelines by the American College of Gastroenterology, which advise against the routine use of GIP,¹⁴ thus highlighting the gap between guidelines and the parent’s perspective on what is useful in day-to-day management.

Parents were judicious in expressing their interest in the PoCT with clearly defined boundaries of use, such as for the differentiation between symptoms that may be associated with gluten consumption. They also expressed their potential usefulness in PoCT immediately following diagnosis for a limited time period to provide support during a familiarisation period as new behaviours are established (“Can take over a year to feel more comfortable with the diet as it’s a huge adjustment. First 6 months steep learning curve”).

Differentiation of symptoms was of acute interest for parents, especially when symptoms may vary among those diagnosed. In one interview, parents marvelled that children experienced varied symptoms after inadvertent consumption of gluten. Presentations among the cohort included fatigue, iron deficiency, pruritic rash, vomiting and headaches. For those who were asymptomatic, random urine sampling every 2–3 months would provide the reassurance that intestinal healing was most likely being achieved.

Parents also spoke at length about the factors that helped their children engage with their diagnosis and how they felt the GIP PoCT could be an additional tool. Other factors included understanding the consequences of their actions and relating those consequences to something that was important in their life. One parent recounted how learning about the effects of persistent gluten consumption on fertility spurred her daughter into engaging her diagnosis, as she felt having a family in the future was of major importance to her.

Another parent expressed how a child’s avid involvement in sports and training meant she couldn’t miss it by being unwell, which gave meaning to her diagnosis and encouraged autonomy over her welfare, helping her daughter make the right food choices.

Finally, participants spoke about how a PoCT could increase their child’s autonomy and independence regarding food choice. Food is a social aspect of people’s lives and happiness. Being confident in your food choices as a teenager without obsessing over them is a hard balance to strike. One parent retold a story in which another family friend’s child questioned her daughter, asking “do you have to watch gluten free telly as well?” This innocently articulates the level of sacrifice that can be involved in initially adopting a gluten-free diet.

Suggestions for improvement

Parents recommended the development of instructional materials, including leaflets and illustrated guides tailored to children. Larger or alternative sample containers (eg, jugs) were proposed to reduce mess and stress. Allowing urine collection at home, rather than in the clinic, was widely supported. Parents also advocated for preparatory tools such as social stories, videos, and positive modelling to help children engage confidently with sample collection. Use of an aid that the child is already familiar with such as a story or picture book would also prove helpful (“a similar person, in a similar situation and everything goes ok”). One participant explained how her teenager with T21 used YouTube videos and that she was more at ease in a new environment with the comfort of using something she knew and liked.

These themes are summarised in table 2.

Table 2. Thematic summary of parental perspectives.

Theme	Description
Barriers to urine sampling	Difficulty explaining ‘mid-stream’ collection, lack of instructions, embarrassment and time pressure
Emotional responses to clinical environments	Fear, unfamiliarity, auditory stress, performance anxiety and lack of control
Interest in GIP PoCT	Strong interest in periodic use post-diagnosis, symptom investigation and dietary reassurance
Suggestions for improvement	Educational materials, larger containers, social stories, home collection and environmental supports

GIP PoCT, gluten immunogenic peptide point-of-care tool.

Minor themes

Minor themes arose as a product of interview, as rapport was established with participants. These themes largely centred around the burden of a gluten-free diet and the means by which parents helped their children navigate evolving food choices and the support available to them, such as food behaviour, challenges of the gluten-free diet and challenges engaging adolescents in their own care.

Comments such as “I feel now that she is older, she is longing for things that aren’t gluten free and she’s trying new things and she is starting to suffer a little” and “feeling withdrawn or left out and can manifest food avoidance behaviour” convey a burden of care sentiment and the layers of navigating teenage food choice. From a care perspective, parents expressed adolescence as an “important transitional point in people’s life in adolescence and the approach needs to be different”. Parents also acknowledged that efforts to follow a gluten-free diet stringently had their own challenges (“Degree of anxiety surrounding checking things all the time… Comes home to double-check foods before using them”).

Discussion

This qualitative study provides a novel exploration of parental experiences surrounding GIP urine testing in children with CD. The findings illuminate key barriers to sample collection, highlight the emotional complexities of clinical encounters for children, and reveal widespread parental interest in GIP PoCT as a potential adjunct to dietary monitoring.

We were keen to explore parental perspectives, both in line with the obvious gap detailed by the American College of Gastroenterology and the emerging importance of narrative medicine.^{14 15} A qualitative approach was considered best suited to obtaining these data.^{16 17}

Study design

The role of narrative medicine is to acknowledge both the individual and the collective experience. Focusing on giving children a voice in their own care has shown to improve health outcomes in children. Narrative medicine encourages patients to share their experiences so that their perspective can be acknowledged, with the aim of improving participation in their own care and providing the clinician with greater insight into the patient experience.^18–20

To explore this storytelling element, the semi-structured interviews were conducted using an open-ended approach, providing sufficient structure to build rapport and facilitate the flow of interviews while allowing flexibility to explore new topics in greater depth. This structure enabled the researcher to collect open-ended data while allowing participants to explore important aspects of how they interact with a certain topic, such as their illness and the clinical environment. This represents the exploration of the collective perspective.

A small sample size of 10 parents was included in this study following attrition and failed attendances from those recruited. However, data collection appeared to have reached thematic saturation. Thematic saturation occurs when data collection from new participants is unlikely to yield substantial new material. Previous studies have shown that 70%–90% of themes pertaining to the topic can be identified within as few as 6–10 interviews, particularly when there is considerable homogeneity within the sample.^{16 18}

Interpretation of results

With regard to emergent themes, one of the primary challenges identified was the complexity of instructing children on mid-stream urine collection. Parents frequently expressed confusion about the specifics of the collection process, indicating a need for clearer, child-focused guidance tailored to developmental stages. This echoes previous research suggesting that sample collection in young or pre-continent children poses unique logistical and emotional challenges.²¹ Empowering families through tailored educational materials may alleviate some of this burden and enhance participation.²²

The emotional dimension of sample collection, particularly within the clinical environment, emerged as a significant theme. Children’s distress in unfamiliar, overstimulating settings may contribute to anxiety and hinder cooperation, that is, providing a urine sample in the clinical environment.

Children are perceptive to an environment and to what is going on, not solely based on their ability to communicate verbally but through body language. Interaction with the clinical environment and staff varies. For many, the clinical environment is associated with noise and increased stress levels, is intrusive, and does not feel like a safe space. Poor encounters with the clinical environment can create anticipatory anxiety for subsequent encounters with clinical personnel.

These findings are consistent with broader paediatric research showing that environmental factors and anticipatory fear can negatively influence clinical experiences and health outcomes. By fostering calm, familiar and child-centred environments, clinicians may support more positive interactions and improved compliance. This can be achieved both through pictorial interventions, creating interactive or green spaces, or as mentioned by parents in this study, creating spatial separation from noise or sounds of distress by improved planning of the clinical space.^23–26

Further, we addressed potential interest in the PoCT in CD.

There was unanimous agreement that PoCT would add to parents’ repertoire of aids rather than hinder care. The WHO has suggested that improved adherence may have a greater impact on health outcomes than specific therapies.²⁷ Listening to the patients’ perspective and providing them with tools they believe will improve adherence reflects the American College of Gastroenterology’s supposition that guidelines may not reflect patients’ wishes and that the PoCT may improve patients’ sense of control.¹⁴ Given the burden of treatment that goes with changing food behaviour, tools to improve engagement may help bridge the gap between compliance and improved health outcomes.^{28 29} This specifically becomes of paramount importance as children grow and become autonomous in their own care.

The enthusiasm expressed by parents for the future implementation of GIP PoCT reflects a clear demand for tools that can provide real-time feedback on dietary adherence. Suggested use cases—such as periodic checks, post-exposure reassurance or support during the initial post-diagnosis phase—highlight the practical utility parents foresee in these technologies. This perspective aligns with recent discussions in literature about personalised approaches to CD management and the role of emerging biomarker-based monitoring tools.

While previous studies in GIP have explored their potential for clinical utility including in monitoring adherence^30–32 and as a predictive value in mucosal healing,⁷ this pilot study is novel in addressing patients’ and parents’ experience at the point of use by exploring their perspectives on collective experience. This pilot evolved from previous American Journal of Gastroenterology guideline that surmised that patients’ perspective may strengthen future recommendations for its use in clinical follow-up.¹⁴

Minor themes

Minor themes were also explored, which arose repeatedly in interviews including food behaviours, challenges of the gluten-free diet and challenges engaging adolescents in their own care.

A gluten-free diet is a unique medical treatment for CD. However, a diet is a variable entity, in contrast to the simplicity of a pill. Given its ubiquity in foodstuffs, particularly in Western diet and processed foods, this change requires active effort to adjust. Age of diagnosis has been shown to affect the ease with which patients adjust to this change.³³ Given the burden of treatment associated with changing food behaviour, tools to improve engagement may help bridge the gap between compliance and improved health outcomes. This is particularly important as children grow and become autonomous in their own care.^{28 29 33}

Providing examples of gluten-free meals and guidance on how to eat well while following a gluten-free diet should be addressed as a social aspect of people’s lives.²⁹ Information on recipes and food options to prevent food fatigue should be provided through early intervention by the multidisciplinary team. Supporting people as they make changes to established food behaviour acknowledges the difficulty in doing so.

Parents expressed that the adoption of a gluten-free diet creates new frustrations and anxiety for both young children and adolescents.³⁴ In a food-related issue, the whole family is often involved in treatment. Parents highlighted that flexibility around food choice is influenced by the age at diagnosis and previous knowledge of food and cooking. Food is a notoriously intimate topic, and its control can often be perceived as an intrusion, both socially and culturally.³⁵ Parents were concerned that fixating on food in a vulnerable age group could have deleterious consequences, especially at a time when children are adapting to a new body image and experiencing CD-associated symptoms such as bloating.

Parents expressed that frequent sampling with PoCT in the early familiarisation period would provide their children and themselves with a tool that would help them learn skills, adapt to their new diet and aid transition from childhood to adulthood. Importantly, parents advocated supportive strategies to ease the collection process and reduce stress for both children and caregivers. These included not only instructional aids but also social stories, home-based sampling options and positive reinforcement. Parents also advised providing information in letters that may help parents prepare their child for something that may be fear-inducing. Preparing parents may also help prepare children for the consultation.

These recommendations underscore the value of involving end-users in the design and deployment of new diagnostic and monitoring tools.

Limitations

This study has several limitations that warrant consideration. First, a single interviewer conducted each of the semi-structured interviews. Although this may limit inter-interviewer variability, the quality of the research is dictated by how well the interview was conducted and whether the participants were influenced during the interview in any way.

Regarding the participants, volunteer or self-selection bias was evident among parents who attended the scheduled sessions. Second, all participants were mothers despite attempts to recruit some fathers who defaulted to their female partners. Culturally, despite possible assumption that mothers are the primary caregivers in a conventional family, evidence highlights the longstanding role of fathers in the development of their children and therefore the importance of their own narrative.³⁶ Third, most of the children were girls, which may skew the experiences described. It does somewhat reflect the differences in how CD affects girls versus boys.

Finally, we focused on parents’ perspectives within a paediatric cohort. Evidence would suggest that children’s perspectives are an invaluable contribution to their own care and can facilitate achieving improved outcomes.²³ There is also significant scope to address potential interest among the adult population.

Conclusion

Taken together, the results of this study suggest that GIP PoCT may be a promising adjunct in paediatric CD care—provided that its implementation is informed by real-world family experiences. Future research should consider incorporating children’s perspectives, particularly as they grow into adolescence and assume greater responsibility for their health. Moreover, collaboration with healthcare professionals, educators and diagnostics developers may inform the development of tools that are both clinically effective and acceptable to users.

Although further research is needed in the development of strategies for incorporating PoCT in clinical management, this study suggests further evaluation of patient’s perspectives. To improve adherence, future guidelines may benefit from incorporating patients’ perspectives when considering the use of GIP PoCT.

Data availability statement

Data are available upon reasonable request.