Authors :
Presenting Author: Afsaneh Talai, MD – UT Southwestern
Daniel Freedman, DO – Dell Medical School; Sigita Plioplys, MD – Northwestern University; Hillary Kimbley, PhD – Children's Medical Center Dallas; Kristen Trott, PhD – Nationwide Children's Hospital; Elizabeth Fenstermacher, MD – University of Colorado, School of Medicine; Jennifer Cohen, MD – Connecticut Children's Medical Center; Maija Steenari, MD – Children's Hospital of Orange County; Gisela Sandoval, MD – Stanford University; Priya Tatachar, MD – Ann and Robert H. Lurie Children's Hospital; Tracee Ridley-Pryor, DNP – Le Bonheur Children's Hospital; Dara Albert, DO – Nationwide Children's Hospital
Rationale:
There is a paucity of data on best practices for the outpatient management of pediatric psychogenic nonepileptic seizures (PNES). There have been a few single site studies that have shown the benefit of the multidisciplinary approach to pediatric PNES, showing high rates of diagnosis acceptance, establishment with mental health services, and improvement in events.1,2 Further evidence is lacking regarding the clinical, organizational, and operational specifics of managing children with PNES in the outpatient setting. This study was conducted to gather information from experts in the field of pediatric neurology, psychiatry, and psychology on the optimal outpatient management of these patients to develop national consensus.
Methods:
A core multidisciplinary working group was organized within the PNES special interest group in the Pediatric Epilepsy Research Consortium (PERC). This group consisted of six pediatric neurologists, four psychiatrists, and two psychologists. The PNES working group developed a 143 question Redcap survey based on Delphi methodology. The PNES working group selected national experts in pediatric PNES using rigorous scoring criterion. E-mail invitations were sent to these experts to complete the Redcap survey. For items that consensus was not reached, a second round of questions was sent for further evaluation.
Results:
Eighteen pediatric PNES experts from across the country participated in the study, including five neurologists, five psychiatrists, six psychologists, one social worker, and one nurse. Strong consensus was reached regarding a multidisciplinary clinic approach being the gold standard for the management of PNES. Further consensus was reached regarding the clinic structure, method of administration of the clinic, and personnel needed in the management of these patients. Strong consensus was also reached on need for trainee inclusion. Consensus was not initially reached on the name of the diagnosis, method of diagnosis, and specific roles for each specialist.
Conclusions:
This is the first national Delphi study that explores the needs and practices of the outpatient management of pediatric PNES. This data provides strong tendencies for the specific management of pediatric PNES in the outpatient setting, with the multidisciplinary clinic as the suggested gold standard.
Funding: None