Parental and Medical Classification of Neurodevelopment in Children Born Preterm

Abstract

Background and objectives: The likelihood and severity of neurodevelopmental impairment (NDI) affects critical health care decisions. NDI definitions were developed without parental perspectives. We investigated the agreement between parental vs medical classification of NDI among children born preterm.

Methods: In this multicenter study, parents of children born preterm (<29 weeks) evaluated at 18 to 21 months corrected age (CA) were asked whether they considered their child as developing normally, having mild/moderate impairment, or having severe impairment. Medical categorization was based on hearing, vision, cerebral palsy status, and Bayley Scales of Infant and Toddler Development Third Edition (Bayley-III) scores. Agreement was analyzed using Cohen's weighted κ. Discrepancies in categorization by NDI components and parental demographics were examined using the Pearson χ2 test, Fisher exact test, or Wilcoxon signed-rank test.

Results: Children (n = 1098, gestational age 26.1 ± 1.5 weeks, birthweight 919 ± 247 g) were evaluated at 19.6 ± 2.6 months CA at 13 clinics. Agreement between parental and medical NDI classification was poor (κ = 0.30; 95% CI: 0.26-0.35). Parents described their child's development as normal or less impaired. Only 12% of parents of children classified as having a severe NDI according to the medical definition agreed. There were significant disagreements between classification for children based on Bayley-III cognitive, language, and motor scores but not for cerebral palsy. Discrepancies varied by parental education and ethnicity but not by single caregiver status.

Conclusions: Parent perception of NDI differs from medical categorization, creating a risk of miscommunication. This indicates an overestimation of the impact of disability by clinicians, which may affect life-and-death decisions. Parental perspectives should be considered when reporting and discussing neurodevelopmental outcomes.