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TÜRKÇE
Poster - 33
Developing a Disease-Specific Questionnaire for Assessing Quality of Life and Burden of Disease in Parents with children born with Esophageal Atresia
S Witt*, M Hagen**, M Dellenmark-Blom***, J Dingemann****, J Quitmann*
*University of Applied Sciences Hamburg
**University Medical Center Hamburg-Eppendorf, Hamburg, Germany
***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
****Medical School Hannover
Background: Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) are crucial tools in healthcare, providing insights into the well-being and experiences of patients and their caregivers. For families of children with rare conditions like esophageal atresia (EA), these measures are vital for understanding the broader impacts of chronic health issues and optimizing healthcare support systems. Despite medical advancements, children with EA often experience persistent health complications, affecting both their own and their caregivers’ quality of life (QoL). However, no disease-specific tool currently exists to measure the QoL and burden of disease (BoD) of parents caring for children with EA. This research aimed to develop a PROM specifically for these parents, improving healthcare support and outcomes for families.
Materials and Methods: The item development phase involved focus group discussions with parents (n=21) of children with EA in Germany, aged 2 to 17 years. These discussions identified key stressors and concerns, informing the creation of a disease-specific questionnaire. Using Kuckartz’s qualitative data analysis method, responses were categorized into themes that guided the first draft of the PROM tailored to parents of children with EA.
Results: Analysis of focus group discussions highlighted critical dimensions of parental QoL and BoD, including emotional distress, healthcare experiences, family dynamics, and financial concerns. Parents described challenges managing their child’s diagnosis, daily care complexities, feeding issues, and navigating healthcare systems. These findings informed the development of a 115-item disease-specific questionnaire (pilot-test) covering domains such as diagnosis management, healthcare experiences, nutrition and feeding, family relationships, caregiving support, financial strains, mental and physical health, and social interactions.
Conclusion: Developing this disease-specific questionnaire is a key step in addressing the unique needs of parents caring for children with EA. The PROM will undergo pilot testing, cognitive debriefing, and further validation through psychometric testing. Once validated, it will be a valuable tool for research and clinical practice, enabling healthcare providers to offer more personalized support and improving care outcomes for families.