Note: This article and blog were written by the authors on behalf of the Cerebral Palsy Foundation.
In the January 2024 issue of NeoReviews, we wrote a Perspectives piece titled “A Call for Early Detection of Cerebral Palsy” (10.1542/neo.25-1-e1). The article highlights the history behind early cerebral palsy (CP) detection and provides evidence for validated tools that can be used in NICUs and high-risk infant follow-up programs. Historically, disclosure of a diagnosis even when suspected was often delayed due to multiple barriers, ranging from lack of biomarkers to perceived stigma associated with an incurable diagnosis. However, there is an overall positive perception of early detection by parents, granting them more timely psychological support and an earlier start to seek out interventions to improve their child’s developmental trajectory during a critical period of neuroplasticity. As briefly mentioned at the end of our article, in order to facilitate earlier conversations with families when considering CP, the Early CP Detection and Intervention Network and the Canadian Neonatal Follow-Up Network published a 2022 consensus statement advocating for the use of a “high-risk for CP (HRCP)” designation in two scenarios: 1) an assessment was not performed or had a negative result but other data suggested CP; 2) evaluation of a child for the first time before two years suggests CP, but no previous concerns or assessments are available.1
Essential components that should be considered for the designation are complex, and situations in which it is applied can be fraught with the pressures of a busy clinical practice, vulnerable patients, and families still impacted by early trauma. Therefore, we proposed a checklist for structured guidance, to ensure a consistent and accurate designation given the importance of family conversations and the need for responsible healthcare resource utilization that follow.
Checklists are used daily in various industries and are essential to quality improvement. Dr. Atul Gawande has written extensively about checklist use in medicine to promote safe and efficient knowledge implementation worldwide. Checklists that consider multiple steps of a process (such as follow-through) decrease human error, especially when systems are complex and under pressure.2 This is exactly the case for HRCP designation or CP diagnosis in clinic. This can be a daunting experience, particularly for those starting to implement early CP detection.
HRCP discussions with families remain crucial conversations, even for experienced providers.3 Thus, a checklist (Figure 1) provides a systematic approach to a complex, multifaceted process and serves as a communication tool amongst members of interdisciplinary teams. The checklist has three sections:
- Situation 1: Infant with newborn attributable risks—those likely cared for in NICUs with known risk factors.
- Situation 2: Infant with infant attributable risks—those with no established risk factors in the neonatal period, usually referred later when pediatricians or other providers observe developmental concerns.
- Situation 3: When to consider converting from a HRCP designation to a CP diagnosis.
We acknowledge that every family is different, and conversations should be individualized to meet families where they happen to be at the time. This checklist is a simple and limited guide during a time of medical and emotional complexity. We hope it helps support our teams, as we strive to ensure consistent, high-quality, compassionate care.
References
- Maitre NL, Byrne R, Duncan A, et al; CP EDI Consensus Group; Canadian Neonatal Follow-up Network. “High-risk for cerebral palsy” designation: A clinical consensus statement. J Pediatr Rehabil Med. 2022;15(1):165–174
- Gawande A. Checklist manifesto, the (HB). Penguin Books India; 2010.
- Patterson K, Grenny J, McMillan R, Switzler A, Maxfield DG. Crucial conversations: Tools for talking when stakes are high. New York: McGraw-Hill; 2002 Jun 18.
