Use of term reference infants in assessing the developmental outcome of extremely preterm infants: lessons learned in a multicenter study

Charles E. Green, Jon E. Tyson, Roy J. Heyne, Susan R. Hintz, Betty R. Vohr, Carla M. Bann, Abhik Das, Edward F. Bell, Sana Boral Debsareea, Emily Stephens, Marie G. Gantz, Carolyn M. Petrie Huitema, Karen J. Johnson, Kristi L. Watterberg, Ricardo Mosquera, Myriam Peralta-Carcelen, Deanne E. Wilson-Costello, Tarah T. Colaizy, Nathalie L. Maitre, Stephanie L. MerharIra Adams-Chapman, Janell Fuller, Michelle E. Hartley-McAndrew, William F. Malcolm, Sarah Winter, Andrea F. Duncan, Gary J. Myer, Stephen D. Kicklighter, Myra H. Wyckoff, Sara B. DeMauro, Anna Maria Hibbs, Barbara J. Stoll, Waldemar A. Carlo, Krisa P. Van Meurs, Matthew A. Rysavy, Ravi M. Patel, Pablo J. Sánchez, Abbot R. Laptook, C. Michael Cotten, Carl T. D’Angio, Michele C. Walsh, Richard A. Polin, Martin Keszler, Angelita M. Hensman, Elisa Vieira, Lucille St Pierre, Robert T. Burke, Barbara Alksninis, Andrea Knoll, Mary L. Keszler, Teresa M. Leach, Elisabeth C. McGowan, Victoria E. Watson, Nancy S. Newman, Bonnie S. Siner, Elizabeth Roth, Angelia Williams, Brenda B. Poindexter, Kurt Schibler, K. Tanya E. Cahill, Cathy Grisby, Kristin Kirker, Sara Stacey, Sandra Wuertz, Ronald N. Goldberg, Ricki F. Goldstein, Patricia L. Ashley, Deesha Mago-Shah, Joanne Finkle, Kimberley A. Fisher, Kathryn E. Gustafson, Caitlin Stone, Matthew M. Laughon, Janice Bernhardt, Janice Wereszczak, Jennifer Talbert, Alexandra Bentley, Laura Edwards, Ginger Rhodes-Ryan, Donna White, David P. Carlton, Yvonne Loggins, Diane Bottcher, Sheena L. Carter, Salathiel Kendrick-Allwood, Maureen Mulligan LaRossa, Judith Laursen, Colleen Mackie, Amy Sanders, Gloria Smikle, Lynn Wineski, Andrew A. Bremer, Rosemary D. Higgins, Stephanie Wilson Archer, Amir M. Khan, Kathleen A. Kennedy, Andrea F. Duncan, Elizabeth Allain, Julie Arldt-McAlister, Fatima Boricha, Allison G. Dempsey, Carmen Garcia, Donna J. Hall, Janice John, M. Layne Lillie, Karen Martin, Georgia E. McDavid, Shannon L. McKee, Michelle Poe, Kimberly Rennie, Tina Reddy, Shawna Rodgers, Daniel K. Sperry, Sharon L. Wright, Leif D. Nelin, Jonathan L. Slaughter, Sudarshan R. Jadcherla, Christopher Timan, Patricia Luzader, Melanie Stein, Rox Ann Sullivan, Helen Carey, Stephanie Burkhardt, Mary Ann Nelin, Erna Clark, Kristi Small, Jacqueline McCool, Lindsay Pietruszewski, Jessica Purnell, Kyrstin Warnimont, Laura Marzec, Bethany Miller, Demi R. Beckford, Hallie Baugher, Katelyn Levengood, Nancy Batterson, Jill Tonneman, Krystal Hay, Brittany DeSantis, Dennis Wallace, Jeanette O’ Donnell Auman, Margaret Crawford, Jenna Gabrio, Jamie E. Newman, Lindsay Parlberg, Kristin M. Zaterka-Baxter, David K. Stevenson, M. Bethany Ball, Valerie Chock, Dona Bahmani, Barbara Bentley, Maria Elena DeAnda, Anne M. DeBattista, Beth Earhart, Lynne C. Huffman, Casey E. Krueger, Ryan E. Lucash, Heather Taylor, Hali E. Weiss, Namasivayam Ambalavanan, Kirstin J. Bailey, Fred J. Biasini, Stephanie A. Chopko, Monica V. Collins, Shirley S. Cosby, Kristy A. Domnanovich, Chantel J. Jno-Finn, Morissa Ladinsky, Mary Beth Moses, Tara E. McNair, Vivien A. Phillips, Julie Preskitt, Richard V. Rector, Kimberlly Stringer, Sally Whitley, Sheree York Chapman, Heidi M. Harmon, Karen J. Johnson, Mendi L. Schmelzel, Jacky R. Walker, Claire A. Goeke, Sarah E. Faruqui, Diane L. Eastman, Michelle L. Baack, Laurie A. Hogden, Megan M. Henning, Chelsey Elenkiwich, Megan Broadbent, Sarah Van Muyden, Robin K. Ohls, Conra Backstrom Lacy, Sandra Sundquist Beauman, Mary Ruffner Hanson, Jean R. Lowe, Elizabeth Kuan, Eric C. Eichenwald, Barbara Schmidt, Haresh Kirpalani, Soraya Abbasi, Aasma S. Chaudhary, Toni Mancini, Jonathan Snyder, Kristina Ziolkowski, Ronnie Guillet, Satyan Lakshminrusimha, Anne Marie Reynolds, Rosemary L. Jensen, Joan Merzbach, William Zorn, Osman Farooq, Gary J. Myers, Mary Rowan, Diane Prinzing, Melissa Bowman, Ann Marie Scorsone, Kyle Binion, Constance Orme, Premini Sabaratnam, Alison Kent, Rachel Jones, Elizabeth Boylin, Emily Li, Jennifer Kachelmeyer, Kimberly G. McKee, Kelly R. Coleman, Brenna Cavanaugh, Luc P. Brion, Diana M. Vasil, Sally S. Adams, Frances Eubanks, E. Rebecca McDougald, Lara Pavageau, Pollieanna Sepulveda, Alicia Guzman, Elizabeth Heyne, Lizette E. Lee, Azucena Vera, Jillian Waterbury, Cathy Twell Boatman, Bradley A. Yoder, Mariana Baserga, Roger G. Faix, Stephen D. Minton, Mark J. Sheffield, Carrie A. Rau, Shawna Baker, Susan Christensen, Sean D. Cunningham, Jennifer O. Elmont, Becky Hall, Erika R. Jensen, Manndi C. Loertscher, Trisha Marchant, Kandace M. McGrath, Hena G. Mickelsen, Galina Morshedzadeh, D. Melody Parry, Kelly Stout, Ashley L. Stuart, Kimberlee Weaver-Lewis

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

Objective: Extremely preterm (EP) impairment rates are likely underestimated using the Bayley III norm-based thresholds scores and may be better assessed relative to concurrent healthy term reference (TR) infants born in the same hospital. Study design: Blinded, certified examiners in the Neonatal Research Network (NRN) evaluated EP survivors and a sample of healthy TR infants recruited near the 2-year assessment age. Results: We assessed 1452 EP infants and 183 TR infants. TR-based thresholds showed higher overall EP impairment than Bayley norm-based thresholds (O.R. = 1.86; [95% CI 1.56–2.23], especially for severe impairment (36% vs. 24%; p ≤ 0.001). Difficulty recruiting TR patients at 2 years extended the study by 14 months and affected their demographics. Conclusion: Impairment rates among EP infants appear to be substantially underestimated from Bayley III norms. These rates may be best assessed by comparison with healthy term infants followed with minimal attrition from birth in the same centers. ClinicalTrials.gov ID: Term Reference (under the Generic Database Study): NCT00063063.

Original languageEnglish
Pages (from-to)1398-1405
Number of pages8
JournalJournal of Perinatology
Volume43
Issue number11
DOIs
StatePublished - Nov 2023

Bibliographical note

Publisher Copyright:
© 2023, This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.

Funding

The National Institutes of Health and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (U10 HD21373, UG1 HD21364, UG1 HD21385, UG1 HD27851, UG1 HD27853, UG1 HD27856, UG1 HD27880,UG1 HD27904, UG1 HD34216, UG1 HD36790, UG1 HD40492, UG1 HD40689, UG1 HD53089, UG1 HD53109, UG1 HD68244, UG1 HD68270, UG1 HD68278, UG1 HD68263, UG1 HD68284; UG1 HD87226, UG1 HD87229) and the National Center for Advancing Translational Sciences (NCATS) (UL1 TR6, UL1 TR41, UL1 TR42, UL1 TR77, UL1 TR93, UL1 TR105, UL1 TR442, UL1 TR454, UL1 TR1117, provided grant support for the Neonatal Research Network, including for the Follow-up Study. The National Institutes of Health and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) provided grant support for the Neonatal Research Network for the Term Reference Study. NICHD staff provided input into the study design, conduct, analysis, and manuscript drafting; NCATS cooperative agreements provided infrastructure support to the NRN. While NICHD staff had input into the study design, conduct, analysis, and manuscript drafting, the comments and views of the authors do not necessarily represent the views of NICHD, the National Institutes of Health, the Department of Health and Human Services, or the U.S. Government.

FundersFunder number
Neonatal Research Network
National Institutes of Health (NIH)
U.S. Department of Health and Human Services
National Center for Advancing Translational Sciences (NCATS)UL1 TR105, UL1 TR442, UL1 TR454, UL1 TR1117
National Center for Advancing Translational Sciences (NCATS)
Eunice Kennedy Shriver National Institute of Child Health and Human DevelopmentUG1 HD27851, UG1 HD34216, UG1 HD27853, UG1 HD68270, UG1 HD27856, UG1 HD53109, UG1 HD68284, UG1 HD27904, UG1 HD53089, UG1 HD36790, U10 HD21373, UG1 HD40689, UG1 HD87229, UG1 HD68263, UG1 HD21385, UG1 HD68244, UG1 HD21364, UG1 HD68278, UG1 HD40492, UG1 HD27880, UG1 HD87226
Eunice Kennedy Shriver National Institute of Child Health and Human Development

    ASJC Scopus subject areas

    • Pediatrics, Perinatology, and Child Health
    • Obstetrics and Gynecology

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