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 Bann, Abhik Das, Edward F. Bell, Sana Boral Debsareea, Emily K. Stephens, Marie G. Gantz, Carolyn M. Petrie Huitema, Karen Johnson, Kristi L. Watterberg, Ricardo A. Mosquera, Myriam Peralta-Carcelén, Deanne E. Wilson-Costello, Tarah T. Colaizy, Nathalie L. Maitre, Stephanie L. Merhar, Ira Adams‐Chapman, Janell Fuller, Michelle Hartley-McAndrew, William 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 M. Knoll, Mary Lenore 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 L. White, David P. Carlton, Yvonne Loggins, Diane I. Bottcher, Sheena L. Carter, Salathiel Kendrick-Allwood, Maureen Mulligan LaRossa, Judith Laursen, Colleen Mackie, Amy Sanders, Gloria V. Smikle, Lynn Wineski, Andrew A. Bremer, Rosemary D. Higgins, Stephanie Wilson Archer, Amir Khan, Kathleen A. Kennedy, Andrea F. Duncan, Elizabeth Allain, Julie Arldt-McAlister, Fatima Boricha
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. GOV ID: Term Reference (under the Generic Database Study): NCT00063063.