Authors :
Presenting Author: Lorna Myers, Ph,D. – Northeast Regional Epilepsy Group
Kirsty Bortnik, Ph.D. ABPP-CN – Clinical Neuropsychologist, Pacific Neuroscience Institute; Robert Trobliger, Ph.D. – Director, Neuropsychology, Northeast Regional Epilepsy Group
Rationale:
Patients diagnosed with PNES (and who are experiencing PNES at a moderate to high frequency) often find it challenging to remain employed or continue with their education. If not provided with accommodations, many eventually leave their jobs or studies and this can have significant socioeconomic ramifications for patients and their families. Reports from Europe have documented that a substantial number of patients with PNES are unemployed, receive sick pay or long-term disability pensions. Less is known about prevalence rates of these factors in patients with PNES in the USA.
Methods:
All consecutive patients diagnosed with PNES (2018 through 2021) at the Northeast Regional Epilepsy Group were included in the study. Exclusion criteria included 1) patients diagnosed with PNES and epilepsy, and 2) PNES patients younger than 16 years of age (legal driving age). For each, authors checked for 1) requests for medical records from the state’s Division of Disability Services which are filed under “Disability Forms” or “Medical Records Request” and/or 2) work and disability status in the patient’s neuropsychological report’s background history, and 3) requests for reinstatement of driving privileges (requiring six months seizure freedom in New Jersey).
Results:
83 patients were included in this study (69 female, 11 male, 3 non-binary). One-third of the sample had been granted or were applying for disability (three were classified as “temporarily disabled”). Only 45 (54.2%) were still employed or in school (excluding homemakers). A total of 24 (28%) patients had requested to have their driving privileges reinstated, which signifies they were reporting seizure-freedom for at least six months. Of those who were applying for resumption of driving privileges, five were receiving disability payments.
Conclusions:
The findings that nearly half of the patients who had been diagnosed with PNES had been working and were now unemployed or had left college, and that one third were receiving or applying for disability benefits, underscores a serious potential for chronic loss and withdrawal from a productive life in this group of patients. On the bright side, nearly one third had requested to have their license reinstated, which suggests that these individuals had achieved seizure-freedom for a certain span of time and were attempting to recover their independence and mobility. These findings suggest clinicians should consider including occupational/academic (and driving) goals in their patients’ treatment plans. Future research directions might examine those who become permanently disabled versus those who resume their activities. Furthermore, it might make sense to include “return to work or school” as important variables to measure in psychotherapy outcome studies when assessing the effectiveness of a treatment.
Funding: No funding was received to support this project.