153 - Parent-reported health outcomes at preschool age of a population-based cohort of preterm survivors

Most existing literature on health status (HS) and health-related quality of life 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 outcomes (PRO) and standardized neurodevelopmental outcomes measured in preterm survivors at preschool age. Understanding parent and clinician perspectives may provide useful information for healthcare planning, resource allocation and developing health-improving interventions.

Objective:

To present PRO at 36 months’ age in a population-based cohort of very preterm survivors and compare these 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 and enrolled in a population-based database. HS was measured across 12 different domains using the Health Status Classification System for Pre-School Children (HSCS-PS) questionnaire completed by parents at 36 months' age. Neurological examination and standardized developmental assessments were completed by clinicians using the Bayley Scales of Infant and Toddler Development – III at the same age 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 clinician and parent outcomes was assessed using Cohen's weighted kappa coefficient.

Results:

Of 118 children included, there were 47 and 71 children < 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% (Table 1). 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 (Table 2). 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 3). Weighted Kappa coefficient was 0.33 (CI=0.20, 0.46).

Conclusion(s):

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 parent and clinician-reported outcomes. Both perspectives are important while developing health care services.