Assessing Parents Knowledge of Coeliac Disease: A Prospective Study of 70 Cases

Abstract

Background: Celiac disease is treated by following a strict gluten-free diet for life. Following this diet is practically difficult and the patient requires appropriate management.

Objective of the Study: To assess the knowledge of the parents of children being followed for celiac disease in order to answer the different questions asked by the parents, thus being able to help them better adhere to the gluten-free diet and improve their social life by providing them with the necessary information about the diet and the disease.

Patients and Methods: Prospective survey with a descriptive aim carried out among 70 parents of children followed in the pediatric gastroenterology and nutrition unit during a period of 6 months, from December 2021 to May 2022. The parents are questioned by a questionnaire divided into three parts and which was established in the therapeutic education sessions and also in the medical and dietetic consultations.

Results: The average age of our patients was 9.92+/- 7.10 with a predominance of the female sex (sex ratio = 0.82). More than half of the parents were illiterate. Good compliance with the gluten-free diet was found in most patients, especially in 63.38%. Non-compliance with the diet was explained by denial of the disease in 24.4%. More than half of the patients had dietary and medical consultations, with half of them following up every six months. Information on the disease and the diet was provided by health professionals in the majority of cases (88.73%). On the part of the questionnaire assessing the parents’ knowledge of the disease 49.3% of the parents knew that the diet is for life; 32.39% of the parents knew that the disease is autoimmune, 59.15% knew the risk of cancer. 36.62% knew about the risk of infertility related to the disease and 32.39% were aware of the risk of delayed puberty. It was noted that 61.97% of the parents read the labels of the marketed products before consumption. 21.13% of the parents checked the presence of gluten in medicines.

Conclusion: Despite good compliance with the gluten-free diet noted in most patients, awareness and continuous therapeutic education of patients and their relatives on the disease and its management remain the essential weapons to ensure compliance with the gluten-free diet for life.