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

Importance It is not known whether respiratory morbidity associated with very premature birth and bronchopulmonary dysplasia (BPD) influence parents’ health and family functioning beyond infancy. Objective To 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 participants In 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. Exposure Respiratory symptoms, categorised as ‘none’, ‘mild’ and ‘moderate-severe’. Main outcomes and measures The 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. Results Of 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 relevance Our 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. Question Is 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? Findings In 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. Meaning Families of survivors of very premature birth need appropriate monitoring and support to cope with the burden of respiratory morbidity. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This research received funding from Lunge Zürich (#2020-06). We also acknowledge the support of the European Respiratory Society Fellowship Long-Term Research Fellowship 2020. We are grateful for the support of Giancarlo Natalucci by the Family Larsson-Rosenquist Foundation. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The study was approved by the Ethics Committee of the Canton of Zurich, Switzerland (2020-02396). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes Reasonable requests to share data will be subject to institutional agreements and ethics approvals. Data requests should be sent by email to the corresponding author.