To evaluate, in a cohort of children born extremely preterm, the hypothesis that increasing severity of retinopathy of prematurity (ROP) is associated with less optimal vision, neurodevelopmental outcomes, and parent-reported quality of life.

The Extremely Low Gestational Age Newborn study is a multicenter, longitudinal cohort study. Study participants were born before 28 completed weeks of gestation during the years 2002 to 2004 and were enrolled at birth at 14 U.S. hospitals. Based on retinal examinations by ophthalmologists, participants were classified during their initial hospitalization according to the severity of ROP. At 10 years of age, study psychologists evaluated participants' cognitive abilities, academic achievement, and behaviors indicative of autism spectrum disorder. Participants were classified with regard to gross motor function, anxiety, depression, and quality of life based on parents' responses on standardized questionnaires.

After adjustment for confounders, increased severity of ROP was associated with increased severity of vision/eye problems, worse scores on math achievement tests, as well as higher prevalence of anxiety and lower quality of life as reported by the parent when the child was 10 years old. A history of blindness in one or both eyes was associated with these same outcomes, as well as worse scores on assessments of cognitive function, reading ability, and social responsiveness.

Among extremely preterm children, severe ROP and severe eye or vision problems are associated with adverse neurodevelopmental outcomes and lower quality of life.

Severe retinopathy of prematurity in extremely low gestational age neonates (ELGANs) is likely to have adverse outcomes at 10 years of age.

Severe ROP in ELGANs is associated with parent-reported lower quality of life at 10 years.

Blindness in one or both eyes following ROP is associated with multiple adverse outcomes at 10 years.

S.S. conceptualized and designed the study, drafted the initial manuscript, and critically reviewed and revised the manuscript for important intellectual content.

T.M.O. conceptualized and designed the study, obtained funding for the data analysis, supervised recruitment, and data collection, drafted the initial manuscript, and critically reviewed and revised the manuscript for important intellectual content.

E.T.J. provided essential methodological expertise during the development of the analysis plan and supervision during the data analysis, and critically reviewed and revised the manuscript for important intellectual content.

V.Z. and J.X.Y. analyzed the data and critically reviewed and revised the manuscript.

M.M. supervised recruitment and data collection, collaborated in writing impact of past ROP studies on long term neurodevelopmental, cognitive, and educational outcomes. and critically reviewed and revised the manuscript for important intellectual content. Dr. Robert M. Joseph provided essential methodologic expertise to and supervision of the data collection (cognitive outcomes and autism diagnosis), collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content.

K.C.K.K. obtained grant funding to support the data collection, supervised data collection and recruitment, collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content.

J.A.F. provided essential methodologic expertise and supervision of data collection (psychiatric outcome data), collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content.

S.R.H. collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content.

H.P.S. Jr. collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content.

S.G. collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content.

C.D. collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content.

O.D. collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content.

J.S. collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content.

R.C.F. obtained funding for data analysis, collaborated on interpretation of the data, and critically reviewed and revised the manuscript for important intellectual content

All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work

*A complete list of group members appears in the Acknowledgments.

Received: 07 May 2025

Accepted: 07 August 2025

Article published online:
21 August 2025

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