Objective:

To obtain qualitative information about patient and parent perspectives on the diagnosis of pediatric psychogenic nonepileptic events (PNEE).

Background:

PNEE is a common diagnosis in pediatric neurology and epilepsy clinics, affecting mostly adolescent patients. There is a paucity of research from the adolescent perspective about the terminology used and how providers discuss this diagnosis. This study focuses on both the viewpoint of the parent and child affected by a PNEE diagnosis.

Design/Methods:

Surveys were emailed out via REDCap to patients of the Dell Children’s Medical Center PNEE clinic with an established diagnosis of PNEE. Subjects agreed to participate in research and consented to the survey.

Results:

Nineteen parents and 10 children completed the survey. Psychogenic nonepileptic seizures (PNES) and PNEE were the most frequently diagnosed (31.6% of parents for each term) but only 33.3% and 50% of parents were ‘completely confident’ in these diagnoses, respectively. Furthermore, parents said PNEE (33.3%), epilepsy (22.2%), and non-epileptic events (16.7%) were the most accurate description of their child’s condition; their children had identical thoughts on the 3 most accurate diagnoses but with different percentages (PNEE: 22.2%; epilepsy: 22.2%; non-epileptic events: 33.3%)

Patients and parents also gave written responses on the most reassuring and frustrating aspects of the PNEE diagnosis. The most common reassuring factors were 1) PNEE was a known medical condition with available treatment, 2) PNEE does not cause lasting neurological damage, and 3) the medical team was kind, supportive, and understanding with families. A common concern from patients is that they were accused of faking their symptoms prior to diagnosis.

Conclusions:

This survey provides data that parents are reassured by having a diagnosis and patients are reassured that they are not faking their symptoms. This survey highlights the need for more research into adolescent and parent perspectives of the PNEE diagnosis.