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Long-Term Burden of BPD and Health-Related Quality of Life (BronQ Family)
Sponsor: Global Foundation for the Care of Newborn Infants
Summary
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.
Official title: BronQ Family: Assessing the Long-term Impact of Bronchopulmonary Dysplasia (BPD) on Affected Families' Health-related Quality of Life
Key Details
Gender
All
Age Range
0 Years - 18 Years
Study Type
OBSERVATIONAL
Enrollment
480
Start Date
2025-09-16
Completion Date
2027-01
Last Updated
2025-11-21
Healthy Volunteers
Yes
Conditions
Interventions
N/A, no intervention, participation in survey
A 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.
Locations (1)
Global Foundation for the Care of Newborn Infants (GFCNI)
München, Bavaria, Germany