BronQ Family: assessing the long-term impact of Bronchopulmonary Dysplasia on affected families' health-related quality of life - protocol of a multi-country study.

内容摘要

Bronchopulmonary Dysplasia (BPD) is a frequent chronic complication of preterm birth. While clinical outcomes have been widely studied, evidence on the long-term impact on parents and caregivers - particularly beyond early childhood and across different countries - remains limited. The BronQ Family study investigates the health-related quality of life (HRQoL) and lived experiences of caregivers of children and adolescents with BPD. This multinational, cross-sectional study is conducted in six European countries and the United States. Parents and primary caregivers of preterm-born children (<37 weeks' gestation) under 18 years of age are recruited through international parent networks, healthcare professionals and social media. Data collection takes place between September 2025 and February 2026 via an online questionnaire including socio-demographic characteristics, child health status, caregiver HRQoL (Paediatric Quality of Life Inventory Family Impact Module), health literacy, support structures and economic burden. Group allocation (BPD vs comparison group) is based on reported diagnosis and proxy indicators of neonatal respiratory support. Analyses include descriptive statistics, regression modelling and subgroup comparisons; qualitative responses will be analysed using structured content methods. This study received a waiver by the Ethics Committee of Maastricht University Medical Center+, the Netherlands (MECT 2025-0285). Informed consent is obtained electronically, and data are anonymised and securely stored. Results will be shared with the general public and disseminated through peer-reviewed publications, conferences and stakeholder organisations. NCT07134387.