59 Important Pulmonary Outcomes in Extremely Preterm Infants: Parental Perspectives

Abstract

Abstract Background Lung Injury is frequent in extremely preterm infants. The definition of bronchopulmonary dysplasia (BPD) has changed since it was first described in 1967. Oxygen need at 36 weeks, the current definition, is not closely associated with long-term pulmonary outcomes. This outcome, used in neonatal research, has been chosen by clinicians and researchers, not by parents. Other outcomes related to chronic respiratory disease (such as hospital readmissions, work of breathing, and/or exercise limitation) are rarely measured or reported in outcome research. What pulmonary outcomes are of importance to parents is unknown. Objectives The primary objective of this part of the “parent voices project” was to create a list of respiratory outcomes that are important to parents, both during the NICU hospitalization and after discharge, to be considered in future respiratory outcome studies. Design/Methods Over one year (2020-2021), parents of infants born <29 weeks’ gestational age (GA) who came for follow-up visits when their children were between 18 months and 7 years old, in a large academic centre, were invited to participate. They were asked both closed and open-ended questions about the following topics: • The child’s health and what they would want to improve. • The impacts (negative and positive) of prematurity on the life of their family. • Their decisional regrets. • What they wish they had known both before birth and in the NICU, and their recommendations for clinicians. We examined all the parental answers with a view to discovering how many invoked pulmonary outcomes and which themes parents described when speaking about respiratory health. The goal was to make a list of all the respiratory outcomes that were important to families, both during the NICU hospitalization and longer term. Results were analyzed using mixed methods. Results Among parents (n=285, 98% participation rate), 44% spoke about important pulmonary outcomes. Parents invoked 25 themes when they described respiratory health, some pertaining to NICU hospitalization and others to long-term outcomes (see Table below). Some themes impacted the child (child-centred), such as exercise limitation. Many other pulmonary outcomes having an impact on parents or the whole family were described by parents (parent or family-centred themes). For example, a child who had difficulty breathing would struggle and could have disturbed sleep, but parents often described their own fear, lack of sleep (or disturbed sleep in other children). When children were hospitalized because of a respiratory illness, many of the outcomes described would be both child- and parent-centred: e.g., parental loss of work or income, and loss of equilibrium for the whole family. None of the 285 parents spoke about oxygen at 36 weeks or BPD. The prevalence of parents who describe pulmonary outcomes as impacting the child and/or family was statistically similar in parents of children with and without BPD, born before or after 25 weeks, with a BW of less or more than 750 g. Parents of male infants and those who were readmitted for respiratory issues were more likely to report important pulmonary outcomes. Conclusion Many parents of children born extremely preterm describe important pulmonary outcomes, independent of BPD. None of the parents mentioned oxygen at 36 weeks or BPD. More parents report such outcomes when their child has been readmitted for pulmonary reasons. These adverse outcomes often impact the whole family. Future research will indicate which outcomes need to be included in neonatal trials (or neonatal follow-up).