Results of a National Delphi consensus on the outpatient management of pediatric psychogenic nonepileptic seizures in the United States

Abstract

Background and objectives

The purpose of this study was to develop national consensus based on expert opinion on the optimal outpatient care model of pediatric psychogenic nonepileptic seizures (PNES).

Methods

A core working group (CWG) within the PNES special interest group of the Pediatric Epilepsy Research Consortium was established. The CWG developed a rigorous scoring rubric to select experts in pediatric PNES within the United States of America and a three-round Delphi study was conducted to assess consensus on key components of the management of pediatric PNES in the outpatient setting.

Results

Eighteen experts representing neurology, psychology, psychiatry, social work and nursing participated in the study. Strong consensus was reached that the multidisciplinary clinic (MDC) model is the gold standard for the outpatient management of pediatric PNES. Consensus was obtained that a neurologist, psychologist and social worker are essential members of the MDC and in the setting of unlimited resources, psychiatry and nursing are also recommended. Further consensus was established on the roles of specific personnel, structure of the clinic, billing practices, trainee inclusion, patient inclusion and exclusion, and end of visit management. While consensus was reached that a new term should be developed for this diagnosis, consensus was not reached on the ideal term.

Discussion

Expert consensus was established for the multidisciplinary management of pediatric PNES in the outpatient setting. Specific recommendations were provided that can facilitate the development and implementation of MDCs in other institutions. Further prospective studies are warranted to validate this practice model.