Cerebral palsy (CP) impacts numerous children, and alarmingly, over half of all diagnosed cases have spent time in Neonatal Intensive Care Units (NICUs). This statistic underscores the critical need for early CP evaluation within hospital high-risk follow-up programs. Early diagnosis is paramount because it unlocks timely access to evidence-based interventions specifically designed for CP, significantly improving outcomes. However, the Average Age Of Cerebral Palsy Diagnosis in the United States has been lagging, sitting at approximately 2 years old, far from the recommended target of diagnosis at 12 months or younger.
Groundbreaking progress has been made by five hospital systems in the US, becoming the first globally to successfully integrate the 2017 international CP diagnosis guidelines into clinical practice. Their dedicated efforts have yielded remarkable results, reducing the average age of cerebral palsy diagnosis by an impressive 10 months. This achievement highlights the practicality and effectiveness of these guidelines in facilitating earlier diagnosis, which is crucial for initiating early interventions and substantially enhancing developmental outcomes for children with CP.
This impactful initiative was spearheaded and funded by the Cerebral Palsy Foundation. Nationwide Children’s Hospital, a leading institution that contributed to the development of the international guidelines and was the first to implement them clinically, took the lead in training and collaborating with experts from four other prominent institutions. These included UCLA Mattel Children’s Hospital in Los Angeles, the University of Texas Health Science Center at Houston, University of Utah Health in Salt Lake City, and the Kennedy Krieger Institute in Baltimore, all united by the goal of decreasing the average age of cerebral palsy diagnosis.
“The network approach amplified the impact of this project,” explains Dr. Nathalie Maitre, MD, PhD, Director of the NICU Follow-Up Program at Nationwide Children’s Hospital and principal investigator for the network project. “The open communication, transparency, and mutual respect fostered a collaborative learning environment, allowing each institution to adapt guideline implementation to their specific context and resources.”
To initiate the guideline implementation, each participating institution’s high-risk infant follow-up program conducted a thorough analysis of their strengths, weaknesses, opportunities, and threats. They also examined their processes, from inputs to outputs, to pinpoint key areas for improvement. Throughout the project, continuous process improvement assessments and regular network-wide discussions were integral to their strategy.
After a focused 9-month period of guideline implementation, the collaborative network achieved a significant milestone: reducing the average age of cerebral palsy diagnosis to just 9.5 months. This represents a substantial 10-month improvement from their initial baselines.
Dr. Maitre, the lead author of the network’s publication in Pediatrics, highlights the collaborative spirit: “Traditional research networks often dictate protocols. However, implementation science empowers teams by providing tools and fostering ownership. This team embraced the ‘why’ and innovatively adapted the ‘how’ to achieve remarkable success.”
Successful guideline implementation involved a multidisciplinary approach, engaging neonatologists, developmental pediatricians, therapists, and developmental specialists. Neurologists played a particularly vital role, instrumental in the successful implementation and evaluation of neuroimaging and assessments critical for early diagnosis. Extensive training was essential across all institutions to effectively implement guideline-based neuroimaging and neurologic screenings, which were then combined with motor function assessments, biomarkers, and clinical history to arrive at a diagnosis.
The network continues to expand beyond its initial phase. Dr. Maitre and Rachel Byrne, Executive Director of the Cerebral Palsy Foundation, are currently focused on developing systematic engagement and educational programs for primary care providers and hospitals in underserved communities. Furthermore, Dr. Maitre is actively involved in creating a telehealth adaptation of the guideline implementation program to ensure families can maintain access to care, especially crucial during times like the COVID-19 pandemic.
Dr. Maitre envisions network-driven dissemination and widespread adoption of these guidelines as the first step toward achieving globalized clinical detection of CP in infancy. The ultimate aim is that continuously improving early intervention strategies will become the established standard of care for cerebral palsy, initiated far earlier than the current average age of cerebral palsy diagnosis.
For providers interested in adopting these guidelines in their own programs, Nationwide Children’s Hospital offers training and workshops at their annual conference: “Implementation of Early Detection and Intervention for Cerebral Palsy.”
References:
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. 2020 April 8;145(5):e20192126.
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.
