The Impact on the Quality of Life Among Newly Diagnosed Children With Coeliac Disease in Malta: A Child Versus Parent Perspective.

Background and objective Coeliac disease (CD) is an autoimmune condition that is managed by following a strict lifelong gluten-free diet. Its incidence is rising, and no cure is currently available. CD in children has a significant impact on both patients and their caregivers as they adapt to a new lifestyle. Tools to assess the quality of life (QoL) of children with chronic conditions can shed some light on the disease burden on these families. This study aimed to evaluate the impact on the QoL for newly diagnosed children with CD, considering and comparing both the child's and caregivers' perspectives. It covers various themes including physical and psychological health, the impact on education, and the financial burden on affected families. We sought to evaluate the multidimensional impact of CD on the QoL of newly diagnosed children and their caregivers in Malta and to identify key disparities between child and caregiver perceptions. Different aspects of QoL were assessed, such as financial matters, emotional stress, and physical activity, which were quantified using the standardized KIDSCREEN and CDDUX questionnaire. The perspectives of different patient groups (classified by gender, symptomatology, and age) were compared, providing insights into the differences, which may help refine the management.  Methods This was a retrospective study, collecting data from May 2022 to January 2023. All children under 16 years of age diagnosed with coeliac disease from January 2020 until January 2022 on the Maltese islands, were included in the study. Patients older than 16 years of age or those who had deceased were excluded from the study. The survey comprised the KIDSCREEN-52 and CDDUX questionnaires to assess the QoL. Results A total of 268 children fit the criteria for inclusion, with 134 (50%) children and 134 (50%) matched parent responses. CD was more common among females - 85 (63%) compared to 45 (34%) boys - and children living in the northern region of Malta: 44 (33%). There was no statistically significant difference in QoL when comparing the perspectives of parents vs. children, adolescents vs. young children, boys vs. girls, and asymptomatic vs. symptomatic patients. No significant financial burden was highlighted by the participants. Conclusions The QoL of children with CD in Malta is satisfactory. The perspectives of parents and children on the condition's impact on QoL mostly align, with differences mainly noted regarding the awareness of emotional and social struggles. Our findings suggest that an early CD diagnosis, irrespective of the symptomatology, age, or gender, does not negatively impact the QoL of Maltese children. The study also highlights that despite overall good health, providing adequate psychological, financial, and social support for these children and their families is important to achieve positive outcomes, together with raising further public awareness about this condition.
Competing Interests: Human subjects: Consent for treatment and open access publication was obtained or waived by all participants in this study. University of Malta Research Ethics committee issued approval MED-2024-00106. Animal subjects: All authors have confirmed that this study did not involve animal subjects or tissue. Conflicts of interest: In compliance with the ICMJE uniform disclosure form, all authors declare the following: Payment/services info: All authors have declared that no financial support was received from any organization for the submitted work. Financial relationships: All authors have declared that they have no financial relationships at present or within the previous three years with any organizations that might have an interest in the submitted work. Other relationships: All authors have declared that there are no other relationships or activities that could appear to have influenced the submitted work.
(Copyright © 2024, Hackenbruch et al.)