Long-term impact of BPD on parents and caregivers (BronQ Family)
BronQ Family: Assessing the Long-term Impact of Bronchopulmonary Dysplasia (BPD) on Affected Families' Health-related Quality of Life
This project will see how having a child who had bronchopulmonary dysplasia (BPD) affects parents' and caregivers' quality of life and family burden across several countries using an online questionnaire.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 480 (estimated) |
| Ages | 0 Years to 18 Years |
| Sex | All |
| Sponsor | Global Foundation for the Care of Newborn Infants Academic / other |
| Locations | 1 site (München, Bavaria) |
| Trial ID | NCT07134387 on ClinicalTrials.gov |
What this trial studies
This is a cross-sectional observational survey using a retrospective, self-administered multilingual web questionnaire for parents and primary caregivers of preterm children. It compares caregivers of children who had BPD in the newborn period with caregivers of preterm children who did not have BPD. The questionnaire collects demographic and family background, the child's medical history, parental health-related quality of life, health literacy, emotional and social support, and economic burden. The project is developed and reviewed in partnership with parent organizations, clinical experts, and an external scientific advisory board to guide design, questionnaire content, and analysis.
Who should consider this trial
Good fit: Parents or primary caregivers of preterm-born children under 18 years who can complete the questionnaire and who either had a newborn with BPD (BPD group) or did not have BPD (control group) are the intended participants.
Not a fit: Parents of children born at term, caregivers of children aged 18 or older, people living outside the listed countries, or those unable to complete the questionnaire languages are unlikely to benefit from participating.
Why it matters
Potential benefit: If successful, the results could highlight unmet medical, emotional, and financial needs and guide improvements in family support services and policy planning.
How similar studies have performed: Previous research has documented caregiver burden and reduced HRQoL in families of children with BPD, but large multinational, parent-led online surveys of this scope are relatively uncommon.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: BPD-group: * 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 * who was born or is currently living in the following countries: France, Germany, Italy, the Netherlands, Spain, the United Kingdom (including Northern Ireland) and the United States * providing sufficient proficiency in one of the languages of the questionnaire Control group: * 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 did not suffer from BPD in the newborn period and * who was born or is currently living in the following countries: France, Germany, Italy, the Netherlands, Spain, the United Kingdom (including Northern Ireland) and the United States * providing sufficient proficiency in one of the languages of the questionnaire Exclusion Criteria: BPD-group: * 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 * of a child without a BPD in the newborn period * with insufficient proficiency in one of the languages available in the questionnaire Control group: * Other family members than parents/primary caregivers * Parents or primary caregivers * of children older/equal than 18 years of age * of a child born term * of a child without BPD who has not been discharged yet * with insufficient proficiency in one of the languages available in the questionnaire
Where this trial is running
München, Bavaria
- Global Foundation for the Care of Newborn Infants (GFCNI) — München, Bavaria, Germany (Recruiting)
Study contacts
- Principal investigator: Julia Feiler, Dr — Global Foundation for the Care of Newborn Infants (GFCNI)
- Study coordinator: Christina Tischer, Dr
- Email: research@efcni.org
- Phone: +49 (0)89 / 89083260
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.