RecruitingNCT07134387

Long-Term Burden of BPD and Health-Related Quality of Life (BronQ Family)

BronQ Family: Assessing the Long-term Impact of Bronchopulmonary Dysplasia (BPD) on Affected Families' Health-related Quality of Life

Sponsor

Global Foundation for the Care of Newborn Infants

Enrollment

480 participants

Start Date

Sep 16, 2025

Study Type

OBSERVATIONAL

Conditions

Bronchopulmonary Dysplasia (BPD)Chronic Lung Disease of Newborn HRQOL (Health Related Quality Of Life)

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

Min Age: 0 YearsMax Age: 18 Years

Inclusion Criteria14

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 Criteria14

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

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Interventions

OTHERN/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.