Parental and Medical Classification of Neurodevelopment in Children Born Preterm

Area of Science:

• Pediatrics
• Neurodevelopmental Disorders
• Parental Perceptions

Background:

• Neurodevelopmental impairment (NDI) significantly impacts healthcare decisions for preterm infants.
• Current NDI definitions lack parental input, potentially skewing assessments.
• Understanding parental perspectives is crucial for accurate NDI classification.

Purpose of the Study:

• To investigate the agreement between parental and medical classifications of NDI in preterm-born children.
• To identify discrepancies in NDI categorization based on parental versus medical criteria.
• To explore factors influencing disagreements in NDI classification.

Main Methods:

• A multicenter study evaluated 1098 preterm infants (<29 weeks) at 18-21 months corrected age.
• Parents classified their child's development (normal, mild/moderate, severe impairment).
• Medical classification used hearing, vision, cerebral palsy, and Bayley-III scores; agreement analyzed using Cohen's kappa.

Main Results:

• Poor agreement (κ=0.30) was found between parental and medical NDI classifications.
• Parents generally perceived their child's development as less impaired than medical assessments indicated.
• Significant disagreements arose from cognitive, language, and motor scores, but not cerebral palsy; discrepancies varied by parental education and ethnicity.

Conclusions:

• Parental perception of NDI diverges from medical categorization, risking miscommunication.
• Clinicians may overestimate disability impact, potentially influencing critical care decisions.
• Incorporating parental perspectives is essential for reporting and discussing neurodevelopmental outcomes.