BronQ Family: Assessing the Long-term Impact of Bronchopulmonary Dysplasia (BPD) on Families' Health-related Quality of Life

What this Trial Is About

This research aims to examine the long-term effects on parents and caregivers of children diagnosed with Bronchopulmonary Dysplasia (BPD) as newborns. The study focuses on families of children under 18 years old who were born preterm. Data will be collected through an online questionnaire from participants in France, Germany, Italy, the Netherlands, Spain, the United Kingdom, and the United States. The goal is to understand the impact of BPD on caregivers' quality of life, health literacy, support systems, and the economic burden on families. The study is observational and uses a cross-sectional design with a comparison group. Participants will answer a self-administered web-based survey available in multiple languages. The survey asks about caregiver and child background, medical history including lung problems, parental quality of life, and financial costs. Parents or caregivers of children with BPD and those of preterm children without BPD will be compared. The questionnaire avoids using the term "BPD" for clarity and is developed with input from expert groups and parent representatives. Participants will complete the online questionnaire between September 2025 and February 2026. Researchers will assess parental health-related quality of life using the Pediatric Quality of Life Inventory Family Impact Module, along with questions on the child's medical condition, family economic burden, health literacy, and available support. The study is designed to provide insight into the long-term challenges faced by families affected by BPD and to inform future support strategies.

Long-Term Burden of BPD and Health-Related Quality of Life (BronQ Family)