Respiratory morbidity in preschool and school-age children born very preterm and its association with parents’ health-related quality of life and family functioning

Abstract

ABSTRACTImportanceIt is not known whether respiratory morbidity associated with very premature birth and bronchopulmonary dysplasia (BPD) influence parents’ health and family functioning beyond infancy.ObjectiveTo describe the prevalence and severity of respiratory symptoms in children born very preterm and to assess their association with parents’ health-related quality of life (HRQoL) and family functioning.Design, setting and participantsIn this cross-sectional study, we recruited children born less than 32 weeks’ gestation between January 2006 and December 2019, in the greater Zurich area, Switzerland. Between May and December 2021, parents were invited to complete an online survey for their preterm child and for a control term born (≥37 weeks’ gestation) sibling aged 1 to 18 years. Children with severe chronic conditions or with a recent COVID-19 infection were excluded.ExposureRespiratory symptoms, categorised as ‘none’, ‘mild’ and ‘moderate-severe’.Main outcomes and measuresThe Total Score, the Parent HRQoL Score, and the Family Functioning Score of the Pediatrics Quality of Life Family Impact Module (PedsQL FIM) questionnaire. Associations between respiratory symptoms and these scores were assessed using multivariable linear regression, adjusted for potential confounders.ResultsOf 1,697 eligible very preterm children, the survey was completed for 616 of them (99 with BPD) and 180 controls. Girls made up 45% (46% in controls) of the sample and 63% (60% in controls) of participants were aged 6 to 18 years (school-age). Overall, very preterm children reported a higher risk of respiratory symptoms than controls, especially the preschool group and those with moderate-to-severe BPD. Parents of children with ‘mild’ and ‘moderate-severe’ respiratory symptoms had on average -3.9 [95%CI: -6.6 to -1.1] and -8.2 [-11.2 to -5.2] lower Total Score respectively than parents of children with no symptoms. The same pattern was observed for the other summary scores, and after stratifying by age categories.Conclusions and relevanceOur study suggests that respiratory morbidity in very preterm children has a negative impact on parents’ HRQoL and family functioning, even beyond the first years of life. This finding highlights the need for appropriate monitoring and support for families of survivors of very premature birth.KEY POINTSQuestionIs respiratory morbidity in survivors of very premature birth associated with parents’ health-related quality of life (HRQoL) and family functioning beyond the first years of life?FindingsIn this cross-sectional study including 616 children born very preterm and 185 term born controls, both aged 1 to 18 years, we found that very preterm children remain at increased risk of respiratory morbidity through childhood, and that this is associated with decreased parents’ HRQoL and family functioning.MeaningFamilies of survivors of very premature birth need appropriate monitoring and support to cope with the burden of respiratory morbidity.