The impact of bronchopulmonary dysplasia on caregiver health related quality of life during the first 2 years of life.

OBJECTIVES: Preterm children with bronchopulmonary dysplasia (BPD) frequently require complex home medical regimens and re-hospitalization during the first 2 years of life. The burden of caring for these medically complex children may negatively affect caregiver health related quality of life (HRQoL). The objectives of this study were to measure caregiver HRQoL of children with BPD and to identify factors that impact caregiver HRQoL during the first 2 years of life.

METHODS: Children (n = 186) were recruited from the Johns Hopkins BPD Outpatient Clinic between January 2008 and July 2011. Caregiver HRQoL was measured using The PedsQL(TM) Family Impact Module. Respiratory symptoms and morbidities were assessed using questionnaires.

RESULTS: Among caregivers of BPD children, significant improvement in physical, worry, and daily domains improved longitudinally as children aged. An association was found between lower total HRQoL scores and caregivers of BPD children who reported more respiratory symptoms and acute care usage. No difference in total HRQoL scores was found between caregivers of BPD children requiring respiratory/enteral support and caregivers of children who did not. Caregiver income and educational level did not predict total HRQoL score, but Non-White race and public insurance was associated with a higher total HRQoL score at the first outpatient visit.

CONCLUSION: An association was found between lower HRQoL scores and caregivers of BPD children with frequent respiratory symptoms and acute care usage. Screening for low HRQoL in caregivers of BPD children with frequent respiratory illnesses should be considered to identify those who may benefit from additional support and intervention.