A network of hospitals, led by Nationwide Children’s Hospital, reduced the average age of diagnosis from 19.5 months to 9.5 months after less than a year of guideline implementation work.
More than 50% of all eventual cerebral palsy (CP) cases spend time in the Neonatal Intensive Care Unit, making early CP evaluation a crucial element of any hospital’s high-risk follow-up program. When children are diagnosed early, they may also have early access to evidence-based interventions, which can improve CP-related developmental outcomes substantially. In the United States, the average age of diagnosis for CP has been about 2 years, compared to the target of 12 months of age or younger.
Now, five hospital systems in the United States have become the first in the world to successfully implement, in clinical practice, international CP diagnosis guidelines that were released in 2017. After just nine months of guideline implementation work, their efforts resulted in improving the average age at diagnosis from 19.5 months to 9.5 months.
The endeavor was proposed and funded by the Cerebral Palsy Foundation. The lead institution — Nationwide Children’s Hospital, which had participated in the development of the international guidelines and was the first hospital to implement the guidelines clinically — trained and collaborated with experts at four other institutions eager to reduce age at CP diagnosis: UCLA Mattel Children’s Hospital, Los Angeles; the University of Texas Health Science Center at Houston; University of Utah Health, Salt Lake City; and Kennedy Krieger Institute, Baltimore.
“Working as a network made this effort much more impactful,” says Nathalie Maitre, MD, PhD, director of the NICU Follow-Up Program at Nationwide Children’s and principal investigator on the network project. “Everyone has been transparent, communicative and respectful, allowing us all to learn from each other and see how others navigate guideline implementation with their unique cultures and resources.”
The guidelines involve neonatologists, developmental pediatricians, therapists and other developmental specialists. Dr. Maitre says neurologists were also instrumental in successfully implementing and evaluating the assessments and neuroimaging for early diagnosis. All institutions required significant training to implement the guideline-based neuroimaging and neurologic screenings, which were combined with motor function assessments, biomarkers and clinical history to determine a diagnosis.
Now, Dr. Maitre and Rachel Byrne, executive director of the Cerebral Palsy Foundation, are developing systematic engagement and education efforts for primary care providers and hospitals in underserved communities. Dr. Maitre believes that network-based propagation and widespread implementation of the guidelines is the first step toward globalized clinical detection of CP during infancy — with the follow-up goal that ever-improving early intervention efforts will then become the new standard of CP care.
Byrne R, Noritz G, Maitre NL, Nationwide Children’s Hospital Early Developmental Group. Implementation of early diagnosis and intervention guidelines for cerebral palsy in a high-risk infant follow-up clinic. Pediatric Neurology. 2017;76:66-71.
Maitre NL, Burton VJ, Duncan AF, Iyer S, Ostrander B, Winter S, Ayala L, Burkhardt S, Gerner G, Getachew R, Jiang K, Lesher L, Perez CM, Moore-Clingenpeel M, Lam R, Lewandowski DJ, Byrne R. Network implementation of guideline for early detection decreases age at cerebral palsy diagnosis. Pediatrics. 2020 April 8;145(5):e20192126.
Throughout the past decade, we have made great strides in clinical care and research for neonates. Advancing strong collaborations, digging deeper into the treatment and prevention of prematurity, and leading in research and innovation, has enabled the size and strength of our program to be unmatched. Caring for more than 3,000 babies each year, we are the nation’s largest neonatal center.
- 2010: Comprehensive BPD Center Established Using Innovative Multidisciplinary Approach With Demonstrated Improvements in Survival and Outcomes
- 2012: Guidelines Developed for Extremely Premature Infants Proven to be Life-Changing
- 2014: Neonatal Aerodigestive Program Launched
- 2016: Positive touch in the NICU: Study Led by Nathalie Maitre, MD, PhD, Reinforces Touch Helps Shape Preterm Babies’ Brains
- 2017: Congenital Infections Program Established Combining High Quality Clinical Care With Cutting Edge Research
- 2019: Prediction of Short-Term Neonatal Complications In Preterm Infants Using Exome-Wide Genetic Variation