Insights From the International Consensus on Neuro-Irritability in Pediatric Palliative Care: Expanding the Known, Challenging the Unknown
Abstract
Background and objectives: Many children with severe neurologic impairment (SNI) have complex care coordination and management needs, making them eligible for pediatric palliative care (PPC). Indeed, SNI is associated with numerous, often simultaneous, distressing symptoms. Among these, neuro-irritability is particularly common and impactful. The limited understanding of this condition poses a challenge for clinicians in terms of recognition and management, constituting a significant barrier to adequate care. Given the lack of scientific evidence and clinical practice guidelines, we initiated an international and multidisciplinary project to obtain consensus-based guidance on pediatric neuro-irritability. Methods: A panel of 66 experts from across the world was selected to participate in a 2-round Delphi method. The aim of this process was to gather their opinions and insights in the areas of Definition, Assessment, Monitoring, and Treatment of neuro-irritability as encountered in PPC. Panelists were asked to indicate their level of agreement with a series of statements through an online survey, using a 5-point Likert scale. Consensus on a particular item was defined as achieving ≥75% of (dis)agreement among participants. Results: A total of 55 statements were endorsed during the 2 voting sessions. In addition to defining the fundamental features of neuro-irritability, several core elements of the diagnostic process and follow-up protocol were developed. Recommendations on the pharmacological and nonpharmacological approaches are also provided. Discussion: This first international expert consensus aims to support physicians in identifying and addressing neuro-irritability in children with SNI. Our work provides a framework to enhance knowledge on neuro-irritability and advance clinical practice, identifying unmet needs and areas of uncertainty that warrant further research efforts.