69 A Population-based Study of Parent-reported Health Outcomes at Preschool Age of Children Born Very Preterm

Abstract

Abstract Background Most existing literature on health status (HS) and health-related quality of life (HRQL) of preterm survivors focuses on late childhood, adolescent, and adult age, with only a small body of data on preschool age children. Little is known about the relationship between parent-reported HS outcomes and standardized neurodevelopmental outcomes measured in preterm survivors at preschool age. Objectives To present parent-reported HS outcomes at 36 months of age in a population-based cohort of very preterm survivors and compare parent-reported subjective outcomes to standardized neurodevelopmental outcomes measured by clinicians at the same age. Design/Methods Infants <31 weeks’ gestation born between April 2014 and June 2016 were prospectively followed through the Perinatal Follow-Up Program and enrolled in a population-based database. HS was measured using the Health Status Classification System for Pre-School Children questionnaire, completed by parents when children reached 36 months’ age. At the same age, neurological examination and standardized developmental assessments were completed by clinicians, using the Bayley Scales of Infant and Toddler Development – III to determine neurodevelopmental impairment (NDI). NDI was categorized as none, “mild”, or “significant" (moderate or severe cerebral palsy, Bayley-III <70, blind or required hearing aid). Inter-rater reliability between the physician and parent scores was assessed using Cohen’s weighted kappa coefficient. Results Of 118 children included, there were 47 and 71 children born in <28 and ≥28 weeks’ gestational age, respectively. At 36 months’ age, 73.7% had a parental health concern, mild in >50% and severe in only 8.5%. The most affected HS attributes were language (46.6%) and self-care (39.0%). Nearly 75% of the participants did not meet the criteria for NDI. Of 11 (9.3%) children with significant NDI at 36 months’ age, all parents reported moderate (36.4%) or severe (63.6%) health concerns. Conversely, of 26 (22%) children with parents reporting moderate to severe health concerns, 11 (42.3%) met the criteria for significant NDI (Table 1). Weighted Kappa coefficient was 0.33 (CI=0.20,0.046). Conclusion Most parents expressed at least one concern for their preschool-aged child born preterm. Despite high parental concern, most children did not meet the criteria for NDI via clinician assessment. Overall, there was fair agreement between parental concerns and clinician-reported outcomes.