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Oral Presentation - 42
Quality of Life and Burden of Disease in Parents of Children born with Esophageal Atresia – a Review
S Witt*, M Dellenmark-Blom**, M Hagen***, J Dingemann****, J Quitmann*
*University of Applied Sciences Hamburg
**Department of Pediatric Surgery, Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden Institute of Clinical Sciences, Department of Pediatrics, University of Gothenburg, Gothenburg, Sweden
***University Medical Center Hamburg-Eppendorf, Hamburg, Germany
****Medical School Hannover
Background: Esophageal atresia (EA) is a rare congenital malformation often linked to long-term health challenges, including dysphagia, significantly impacting the quality of life (QoL) of affected individuals. Despite surgical advancements improving survival rates, children with EA frequently experience chronic health issues, placing substantial demands on their caregivers. Notably, the QoL of parents remains understudied, despite their critical role in long-term management and support. The absence of specific tools to measure parental QoL in this context highlights the need for a comprehensive understanding of their experiences and burdens. This work aims to address this gap by systematically reviewing the existing literature on the QoL and burden of disease (BoD) of parents caring for children with EA.
Materials and Methods: A systematic literature review was performed using PubMed and Web of Science databases in November 2020, with an updated search in February 2023. Predefined inclusion and exclusion criteria guided the selection of studies focusing on parental QoL and BoD in the context of EA. The review aimed to identify common stressors, health concerns, and mental health challenges among parents, including anxiety and post-traumatic stress disorder (PTSD).
Results: The review revealed limited research explicitly addressing parental QoL in the context of EA. Studies examining parental well-being often employed various Patient-Reported Outcomes Measures (PROMs), leading to inconsistent findings. However, most studies consistently indicated significant psychological distress among parents, including PTSD symptoms, anxiety, reduced mental health, and overall impaired QoL. These findings highlight the substantial emotional and physical toll on parents as they manage complex medical needs and navigate healthcare systems.
Conclusion: This review underscores a significant research gap concerning the QoL and BoD of parents caring for children with EA. The emotional and physical strain experienced by these parents necessitates further research and the development of disease-specific measurement tools. A deeper understanding of these unique challenges can guide targeted interventions and enhance care for both parents and their children. Future studies should prioritize standardized PROMs and more detailed examinations of parental QoL to ensure comprehensive psychosocial support for caregivers.