Managing Functional Neurological Disorders: Protocol of a Cohort Study on Psychogenic Non-Epileptic Seizures Study, 2019, Altalib et al

[Andy]

Background: Functional neurological disorders (FNDs) are neurological symptoms that cannot be explained by an underlying neurological lesion or other medical illness and that do not have clear neuropathological correlates. Psychogenic non-epileptic seizures (PNES) are a common and highly disabling form of FND, characterized by paroxysmal episodes of involuntary movements and altered consciousness that can appear clinically similar to epileptic seizures. PNES are unique among FNDs in that they are diagnosed by video electroencephalographic (VEEG), a well-established biomarker for the disorder. The course of illness and response to treatment of PNES remain controversial. This study aims to describe the epidemiology of PNES in the Department of Veterans Affairs Healthcare System (VA), evaluate outcomes of veterans offered different treatments, and compare models of care for PNES.

Methods: This electronic health record (EHR) cohort study utilizes an informatics search tool and a natural language processing algorithm to identify cases of PNES nationally. We will use VA inpatient, outpatient, pharmacy, and chart abstraction data across all 170 medical centers to identify cases in fiscal years 2002–2018. Outcome measurements such as seizure frequency, emergency room visits, hospital admissions, suicide-related behavior, and the utilization of psychotherapy prior to and after PNES diagnosis will be used to assess the effectiveness of models of care.

Discussion: This study will describe the risk factors and course of treatment of a large cohort of people with PNES. Since PNES are cared for by a variety of different modalities, treatment orientations, and models of care, effectiveness outcomes such as seizure outcomes and utilization of emergency visits for seizures will be assessed. Outcome measurements such as seizure frequency, emergency room visits, hospital admissions, suicide-related behavior, and psychotherapy prior to and after PNES diagnosis will be used to assess the effectiveness of models of care.

Open access, https://www.dovepress.com/managing-...ort-study--peer-reviewed-fulltext-article-NDT

 

[ScottTriGuy]

"...Since PNES are cared for by a variety of different modalities, treatment orientations, and models of care, effectiveness outcomes such as seizure outcomes and utilization of emergency visits for seizures will be assessed. Outcome measurements such as seizure frequency, emergency room visits, hospital admissions, suicide-related behavior, and psychotherapy prior to and after PNES diagnosis will be used to assess the effectiveness of models of care."

I propose they add another outcome measurement: rates of medical PTSD from a FND label and interactions with health care.

 

[rvallee]

Functional neurological disorders (FNDs), formerly known as conversion disorders, are characterized by preoccupation of neurological symptoms that are driven by a variety of psychopathology

I guess EEGS can now spot "preoccupations" now.

While PNES should be diagnosed with VEEG when possible, the test is not always available or diagnostic (if no seizure episode is captured on VEEG). Therefore, different levels of diagnostic certainty in PNES have been developed, not all requiring VEEG

Sounds more like there should be efforts made to increase the use of this test. Or we could go with feelings. Different schools of thought, I guess.

Oh, boy.

Most studies of PNES only include people who had a VEEG-confirmed diagnosis of PNES, which biases the literature to represent more severe cases in which the seizures were frequent enough to capture during an inpatient VEEG. By including probable PNES, a more generalizable sample may be studied.

It's biasing to have more reliably diagnosed participants in studies. See, that's always the problem with science, it's way too precise and someone has to take a stand against and reject the tyranny of accuracy that impairs belief systems from gaining proper legitimacy.

Conducting a prospective study of a rare disease such as PNES, that requires substantial resources to establish the diagnosis, is not often feasible.

Being accurate is too expensive so let's be less accurate it's all the same anyway, said no actual scientist ever. Same logic behind always keeping with self-reported questionnaires and avoiding objective measures like the plague.

Furthermore, incorporating motivational interviewing techniques at the time of diagnosis increases the likelihood of positive psychiatric outcomes

Bias is good when it gives the answers you want. Psychics have known about this for centuries, by the way. The same could be said of ghost hunters and astrology.

This whole thing is about as close as it gets to a medical religion.

 

[James Morris-Lent]

From what I can see this study design is built to look for plausible causes/interventions that would then need to be investigated in rigorous experiments.

So that would just be another acknowledgment that

PNES are cared for by a variety of different modalities, treatment orientations, and models of care

That are, if these authors are to be trusted, not even known to be plausible based on even observational data.

More backfilling @dave30th