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

The purpose [CMC1] of this study is to describe [CMC2] 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. We conducted a cross-sectional study and 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. We used a validated questionnaire to assess respiratory symptoms and the Pediatrics Quality of Life Family Impact Module (PedsQL FIM) to assess parents’ HRQoL and family functioning. The survey was completed for 616 very preterm children (99 with bronchopulmonary dysplasia (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). Very preterm children reported a higher risk of respiratory symptoms than controls, especially preschoolers 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 PedsQL FIM total score, respectively, than parents of children with no symptoms. The same pattern was observed after stratifying by age categories. [CMC1]LE: Please check if the edit to the sentence “The purpose of this study is to...” retained its intended meaning. Otherwise, please amend. [CMC2]LE: As per journal style, abstract should be unstructured and should end with a conclusion as a new paragraph. Thus, the other headings were removed. Please check if appropriate. Conclusions: 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. What is Known:• The burden of respiratory morbidity associated with very premature birth is high and last far beyond the neonatal period.• Respiratory morbidity contributes to lower health-related quality of life (HRQoL) in parents of very preterm children in early infancy. What is New:• Respiratory morbidity in very preterm children has a negative impact on parents’ HRQoL and family functioning beyond the first years of life.• Parents of very preterm children with moderate and severe respiratory symptoms are the ones who report lower scores, both for preschool and school-age children.

Childhood Outcomes Following Discharge from a Referral Bronchopulmonary Dysplasia Program

“…22 Seventy-seven percent experienced wheezing compared to 10% in one cohort of children with grade 2 or 3 BPD and 24% in another cohort of children with all grades of BPD. 22,23 Forty-two percent of the children in this cohort required tracheostomy placement, compared to 31% in a larger cohort of children with Grade 3 BPD. 9 If a tracheostomy was placed, these children were decannulated later than any cohort reported in the literature.…”

“…Importantly, we did not identify signi cant differences in baseline characteristics between respondents and non-respondents and, reassuringly, our response rate is better than many similar studies. 23,31 Despite these limitations, we believe that this study provides novel data to augment our understanding of the long-term outcomes for children discharged from a referral BPD program and will be useful to clinicians and families.…”

Health-related quality of life in children and adolescents born very preterm and its correlates: a cross-sectional study

“…In the cross-sectional study FLiP (“Frühgeborenen Lungen Projekt” / Premature Infant Lung Project) [22], children born less than 32 weeks’ gestation between January 2006 and December 2019, in the greater Zurich area, Switzerland were recruited. They were all included in the Swiss Neonatal Network & Follow-Up Group (SwissNeoNet), a nationwide registry of very preterm children [23].…”

Prevalence, Prevention and Management of Bronchopulmonary Dysplasia

“…58 Other clinical phenotypes that have been described include interstitial lung disease and peripheral airway involvement that is associated with increased airway resistance and wheezing in later life. 57,60,61 Although the prevalence of symptomatic PPRD decreases after the first 3 years of life, studies continue to demonstrate that children and adults with BPD have reduced exercise tolerance, 64 lower quality of life scores, 65,66 increased airflow obstruction 67,68 and earlier decline in pulmonary function tests (PFTs). 67,69 An obstructive pattern of lung disease, characterized by a reduced functional expiratory volume in 1 sec (FEV 1 ) or a reduced ratio of FEV 1 to forced vital capacity (FVC) is the phenotype most frequently identified in pediatric and adult survivors of prematurity.…”