Patients’ and paediatric gastroenterologists’ assessments of the follow-up of coeliac disease in Spain

Introduction

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.