The birth of a very preterm (VPT, <32 weeks) infant is a medical emergency associated with life-threatening complications and high costs of care. Decision-making by providers and parents requires information on possible outcomes. Here we describe the evolution of outcomes assessments for VPT infants, their limitations, and alternative strategies.

Much of the literature on the follow-up of very low birth weight (<1500 g) or VPT infants focuses on neurodevelopmental disability (NDD; ie, intelligence/developmental quotients generally <70); cerebral palsy [CP], and blindness/deafness). Characterizing the risk of these conditions followed adding birth weight to the US birth certificate in 1949. An early investigator, Lillienfeld,1 demonstrated higher rates of prematurity among children with CP, mental deficiency, and epilepsy than in children without these conditions. These findings were reinforced in the large, prospective Collaborative Perinatal Study.2 The large size and rigorous methods informed the assessment ages and content of subsequent follow-up studies,...

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