Available online 25 June 2025, 502371

Author links open overlay panel, , , , , , , , , AbstractIntroduction

There is high variability in the follow-up of paediatric patients with coeliac disease (CD) in Europe. The aim of this study was to know the current reality of paediatric CD follow-up in Spain through professionals and the patients themselves and their families.

Patients and methods

A cross-sectional descriptive study was conducted using two anonymous web surveys, one aimed at paediatric gastroenterologists, and the other at members of CD patients’ associations.

Results

A total of 96 responses from paediatricians and 4745 from patients (1362 < 15 years) were analysed. Among the professionals, 84.4% carry out follow-up only at the hospital level. 80.2% lack a joint follow-up protocol with primary health care. The transition after the paediatric age is made to adult gastroenterologists by 56.2% of professionals (only 8.3% in a protocolized manner). 58.3% do not have a dietitian and 64.6% do not use quality of life questionnaires. The patients stated that they mainly performed follow-up visits in the hospital (68.8%). Only 15.7% ever consult a dietitian. Scheduled visits were more frequent in paediatric patients than in adults (95.1% vs. 63.5%, P < .001). The variable most associated with attendance at follow-up visits was that the survey had been answered by the patient's parents (odds ratio 2.6, P < .001).

Conclusions

In Spain, there is a lack of follow-up protocols for paediatric CD patients integrating hospitals and primary care, as well as protocols for the transition to adult professionals. The participation of dietitians is very low. Adult patients adhere less to follow-up visits.

ResumenIntroducción

Existe mucha variabilidad en el seguimiento de la enfermedad celíaca (EC) pediátrica en Europa. El objetivo de este estudio es conocer la realidad actual del seguimiento de la EC pediátrica en España a través de los profesionales y de los propios pacientes y sus familias.

Pacientes y métodos

Estudio descriptivo transversal mediante dos encuestas web anónimas, una dirigida a pediatras gastroenterólogos y otra a miembros de asociaciones de pacientes con EC.

Resultados

Se analizaron 96 respuestas de pediatras y 4745 de pacientes (1362 < 15 años). Entre los profesionales, el 84,4% realiza el seguimiento sólo en el nivel hospitalario. El 80,2% carece de un protocolo conjunto de seguimiento con atención primaria. La transición tras la edad pediátrica se hace hacia especialistas en aparato digestivo en el 56,2% (sólo 8,3% de manera protocolizada). El 58,3% no dispone de dietista y el 64,6% no utiliza cuestionarios de calidad de vida. Los pacientes afirmaron realizar las revisiones principalmente en el hospital (68,8%). Sólo un 15,7% consulta alguna vez con dietistas. En pacientes pediátricos las revisiones programadas fueron más frecuentes que en adultos (95,1% vs. 63,5%, P < ,001). La variable más asociada a la asistencia a revisiones fue que la encuesta hubiera sido respondida por los progenitores del paciente (odds ratio 2,6, P < ,001).

Conclusiones

En España faltan protocolos para el seguimiento conjunto de la EC pediátrica entre niveles asistenciales, así como protocolos de transición hacia profesionales de adultos. La participación de dietistas es muy escasa. Los pacientes adultos acuden menos a las revisiones.

Introduction

Coeliac disease (CD) is a systemic immune disorder triggered by gluten and other similar prolamines in genetically susceptible individuals.1 In recent years, significant progress has been made in its diagnosis,1, 2, 3 but there is still considerable variability in the way paediatric CD is followed up in Europe.4

Recently, the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) published its position paper on the follow-up of children and adolescents with CD, in which they review the current evidence and establish recommendations on the most appropriate strategies to monitor growth and symptom resolution, detect any complications and improve adherence to a gluten-free diet.5 With the aim of adapting these recommendations to Spain, the Spanish Society of Paediatric Gastroenterology, Hepatology and Nutrition (SEGHNP) has promoted the development of a consensus document, together with other paediatric and adult scientific societies, both in primary and hospital care.6 When drafting this consensus, it was found that there was very scarce information on how paediatric CD is followed up and its transition in Spain,7, 8 which motivating carrying out this work.

The objective of this study is to understand the current follow-up reality of CD diagnosed in children in Spain through information provided by paediatric gastroenterologists, and by patients and their families.

Section snippetsPatients and methods

A cross-sectional descriptive study was conducted using two anonymous surveys.

Healthcare professionals

A total of 96 paediatric gastroenterologists (Fig. 1) answered the survey, with representation from 14 of the 17 autonomous communities (with the exception of Extremadura, Navarra and La Rioja). The largest number of responses came from the Community of Madrid (31.2%), Andalusia (13.5%) and Catalonia (12.5%). Approximately 82.3% of respondents worked in public health, 11.5% in private practices, and 6.3% in both settings. Regarding site type, 64% worked in tertiary hospitals, 31% in regional

Discussion

The two surveys presented in this paper provide comprehensive information on how CD is currently followed up in the Spanish paediatric population, taking into account the perspectives of healthcare professionals, patients and their families. For patients, differences can also be seen between paediatric and adult patients.

Regarding surveys administered to paediatric gastroenterologists, several have been published in recent years in Europe4, 12, 13 and Oceania.14 It can be seen that the lack of

Conclusions

Attendance at follow-up check-ups is lower outside the paediatric age group. For the follow-up of paediatric patients with CD in Spain, there are few joint follow-up protocols between hospital and primary care, or protocols for patients transitioning to healthcare professionals for adults. The lack of dieticians and nutritionists for a disease whose treatment is essentially dietary was also detected. Strategies need to be developed to improve the transition to adult care.

Funding

No public or private funding has been received for the completion of this study.

Declaration of competing interest

The authors declare that they have no conflict of interests.

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