Bronchopulmonary Dysplasia (BPD)Chronic Lung Disease of NewbornHRQOL (Health Related Quality Of Life)
Investigational drug(s) / intervention(s)
N/A, no intervention, participation in survey
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.
Study 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.
Eligibility
Sex
ALL
Min age
0 Years
Max age
18 Years
Healthy volunteers
Accepted
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
Primary outcome measure(s)
Parental health-related quality of life (HRQoL) assesed by Pediatric Quality of Life Inventory, Family Impact Module (PedsQL FIM) — 09/2025 - 02/2026 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.
Trial sites (1)
Facility
City
Region
Status
Global Foundation for the Care of Newborn Infants (GFCNI)
München
Bavaria
Recruiting
More Global Foundation for the Care of Newborn Infants trials in Germany
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
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