Health-related quality of life in children with coeliac disease and in their families: A long-term follow-up study

ObjectivesThe aim of the study was to assess long-term health-related quality of life (HRQoL) in children and adolescents with coeliac disease (CD), and their parents.MethodsWe re-evaluated prospectively the HRQoL and clinical characteristics of 80 families, assessed 5 years earlier, using a disease-specific questionnaire, the CD Dutch Questionnaire (CDDUX), and a generic questionnaire, the Paediatric Quality of Life Inventory (PedsQL).ResultsAfter a 10-year follow-up, there was no significant change in the total CDDUX and PedsQL scores in children and their parents when compared to the evaluation conducted 5 years earlier. The total CDDUX score reflected a neutral QoL, while for the generic PedsQL was good-very good. The only significant decrease after 5 years was the PedsQL subdomain Emotional functioning. Patients who admitted voluntarily eating gluten reported lower score in CDDUX Diet. Lower scores in subdomain "Physical functioning" (PedsQL) were reported in patients with positivity of TTG or associated diseases.ConclusionsThe CDDUX score indicated a consistently stable and neutral QoL perception among coeliac patients and caregivers, even after 10-year postdiagnosis, suggesting minimal fluctuations in the impact of CD on disease-specific health domains over time. Furthermore, the consistently good PedsQL score could be a reflection of the resilience of coeliac families in coping with this chronic condition. Gluten-free diet compliance was confirmed to be determinant of HRQoL in the long term. The study confirms the importance of extending surveillance on these patients, possibly using different questionnaires, to assess QoL from different perspectives. The health-related quality of life in children with coeliac disease and their parents did not differ after 10 years from diagnosis. image Coeliac disease is a chronic disease associated with a negative impact on the health-related quality of life of children and their families. Health-related quality of life is a multidimensional concept that describes the patient's perception of their well-being. The use of generic (PedsQL) and disease-specific (CDDUX) questionnaires may detect discrepancies in the results which can be explained by the different sensitivity of the instruments to measure the real-life problems of children and adolescents with celiac disease.What is New The health-related quality of life in children, adolescents and their parents did not significantly differ after 10 years from diagnosis, compared with 5 years earlier, with scores corresponding to neutral (CDDUX) and good-very good (PedsQL) quality of life. In this study, the CDDUX is confirmed to be a simple, rapid, but complete tool to assess changes in quality of life over time in children and adolescents with coeliac disease, even on a long-term perspective. The children's CDDUX Diet health domain, that is, how the child feels about compliance to gluten-free diet restrictions, was negatively associated with a poor adherence to a gluten-free diet, even 10 years after diagnosis.