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
The study population consists of parents and caregivers of preterm-born children under 18 years old who have already been discharged from their initial hospital stay. Participants will be recruited from multiple countries, including France, Germany, Italy, the Netherlands, Spain, the United Kingdom/Northern Ireland, and the United States. They will be assigned to the BPD or comparison group retrospectively, based on their answers defining the BPD-status.
Cohort
Retrospective
N/A, no intervention, participation in survey
Other interventionA unified questionnaire will be utilized for all participants, irrespective of their group assignment. Participants will be assigned to the BPD or comparison group retrospectively, based on their answers defining the BPD-status. To enhance comprehension, the questionnaire avoids using the term "BPD" wherever feasible and instead employs a more general reference to lung problems.
Parental health-related quality of life (HRQoL) assesed by Pediatric Quality of Life Inventory, Family Impact Module (PedsQL FIM)
To record the parents' HRQoL, the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM) is implemented, a validated and widely used instrument designed to measure the impact of pediatric acute and chronic health conditions on parents and the family. It consists of 36 items across six parental dimensions (physical, emotional, social, and cognitive functioning, communication, and worry), as well as family daily activities and relationships. It is validated in all official languages of the seven participating countries (English, French, German, Italian, Dutch, Spanish) and allows the calculation of a sum score.
Participant characteristics assesed by self developed online questionnaire
Inclusion/exclusion criteria, Baseline characteristics, socio-demographic characteristics of parent/caregiver, child, and the family situation
Medical Situation of the child assesed by self developed online questionnaire (parent report)
The section assesses the child's overall health, daily functioning, school attendance, and involvement of medical specialists. It covers emotional, cognitive, and behavioral issues (potentially linked to BPD), respiratory health (symptoms, infections, treatments, support), and feeding difficulties. It also records comorbidities and developmental impairments, and includes questions on RSV prevention and infection history.
Economic burden on families (Quantitative and qualitative) assesed by adapted version of the Family Economic Impact Inventory (Domain Family Finances)
The Family Finances section captures family costs related to caring for a child with health conditions, including direct and broader economic impacts such as financial burden, work productivity loss, and healthcare utilization.
Health Literacy (Quantitative) assesed by self-developed online questionnaire
Disease awareness and awareness of consequences
Click on the lead sponsor to view all of their trials.
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
