The objective of this study is to examine the long-term impact of having a child with Bronchopulmonary Dysplasia (BPD) on the parents and caregivers from the time of diagnosis through adulthood. The primary focus will be on parents and caregivers of children until the age of 18 (\< 18) years who were diagnosed with BPD as newborns. Data will be collected through an online questionnaire in France, Germany, Italy, the Netherlands, Spain, the United Kingdom (including Northern Ireland), and the United States. It will ask about inclusion and exclusion criteria, background information (caregiver, child, and family situation), the child's medical situation, parental health-related quality of life (HRQoL), health literacy, feelings, support structures, and economic burden of the family.
Being a parent or primary caregiver of a child until the age of 18 years (0 to under 18 years),
who was born preterm (before 37 weeks of gestation),
who has been discharged from their initial hospital stay after birth,
who suffered from BPD in the newborn period and
Other family members than parents/primary caregivers
Parents or primary caregivers
of a child older/equal than 18 years of age
of a child with BPD who has not been discharged yet
Global Foundation for the Care of Newborn Infants
Lead sponsor
European Society for Paediatric Research (ESPR)
Collaborator
Union of European Neonatal and Perinatal Societies (UENPS)
Collaborator
European Respiratory Society (ERS)
Collaborator