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Am J Perinatol
DOI: 10.1055/a-2679-1788
Original Article

Retinopathy of Prematurity and Neurodevelopmental and Quality-of-Life Outcomes at 10 Years of Age

Sudhir Sriram
1   Section of Neonatology, Department of Pediatrics, The University of Chicago, Chicago, Illinois
,
Elizabeth T. Jensen
2   Department of Epidemiology and Prevention, Wake Forest University School of Medicine, Winston-Salem, North Carolina
,
Michael E. Msall
3   Kennedy Research Center on Intellectual and Neurodevelopmental Disabilities, University of Chicago Comer Children's Hospital Section of Developmental and Behavioral Pediatrics, Chicago, Illinois
,
Joe X. Yi
4   Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina
,
Vasyl Zhabotynski
5   Department of Environmental Sciences and Engineering, Gillings School of Global Public Health, Chapel Hill, North Carolina
,
Robert M. Joseph
6   Department of Anatomy and Neurobiology, Boston University School of Medicine, Boston, Massachusetts
,
Karl C.K. Kuban
7   Division of Pediatric Neurology, Department of Pediatrics, Boston University Medical Center, Boston, Massachusetts
,
Jean A. Frazier
8   Eunice Kennedy Shriver Center and Department of Psychiatry, University of Massachusetts Chan Medical Center, Worcester, Massachusetts
,
Stephen R. Hooper
9   Department of Health Sciences, School of Medicine, University of North Carolina, Chapel Hill, North Carolina
,
Hudson P. Santos Jr.
10   School of Nursing and Health Studies, University of Miami, Coral Gables, Florida
,
Semsa Gogcu
11   Department of Pediatrics, Wake Forest University School of Medicine, Winston-Salem, North Carolina
,
Christiane Dammann
12   Department of Pediatrics, Tufts University Medical Center, Boston, Massachusetts
,
Olaf Dammann
13   Department of Public Health and Community Medicine, Tufts University School of Medicine, Boston, Massachusetts
14   Department of Neuromedicine and Movement Science, Norwegian University of Science and Technology, Trondheim, Norway
,
Jeffrey Shenberger
15   Department of Pediatrics, Connecticut Children's, Hartford, Connecticut
,
Rebecca C. Fry
5   Department of Environmental Sciences and Engineering, Gillings School of Global Public Health, Chapel Hill, North Carolina
,
Thomas Michael O'Shea
4   Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina
,
for the ELGAN-ECHO Study Investigators› Author Affiliations
Funding This study was supported by grants from the National Institute of Neurological Disorders and Stroke (5U01NS040069-05 to Alan Leviton; 2R01NS040069-06A2 to K.C.K.K.), and the Office of the NIH Director (UH3OD023348 to T.M.O. and R.C.F.).
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Abstract

Objective

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.

Study Design

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.

Results

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.

Conclusion

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

Key Points

  • 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.

Keywords

extremely low gestational age neonates - cognitive function - quality of life - retinopathy of prematurity

Authors' Contributions

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.




Publication History

Received: 07 May 2025

Accepted: 07 August 2025

Article published online:
21 August 2025

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