Consensus recommendations for assessment and management of PNES in children

The ILAE Paediatric Psychiatric Issues Task Force has developed expert-based consensus recommendations for the assessment and management of psychogenic non-epileptic (functional) seizures (PNES) in children. These recommendations were informed by an extensive scoping review following systematic review methodology. We are seeking your comments prior to submitting to a journal for peer review.

The scoping review identified 77 studies. The proposed standards include 23 recommendations. A supplemental file is included also for your convenience.

Draft: Scoping Review and Expert-Based Consensus Recommendations for Assessment and Management of Psychogenic Non-Epileptic (Functional) Seizures (PNES) in Children: A Report from the Psychiatric Pediatric Issues Task Force of the International League Against Epilepsy 

Supplemental File

The paper is now open for public comments through 9 December 2022.

 


Comments

3 December 2022

Thank you for developing this much needed consensus recommendations paper.

I have following small suggestions:

  1. The appropriate terminology would be Paroxysmal Non-Epileptic Events (PNEE). It would not be right to use 'psychogenic' as it tends to generalise the causality, whilst the fact is that not all non-epileptic events have a known psychogenic basis. Secondly using 'seizures' in the term PNES can be unintentionally misleading, whilst using the term 'events' would be more reassuring to parents that non-epileptic events would not be detrimental to brain/organ systems unlike epileptic seizures.
  2. A table showing phenomenology based differentiation of PNES from epileptic seizures would be useful for non-neurology paediatricians/physicians.
  3. Frontal lobe onset hyperkinetic seizures can be easily misdiagnosed as PNES. Frontal lobe onset seizures can have a normal ictal EEG too, depending on the seizure onset zone. It would be useful to put these caveats.
  4. From psychology point of view, review of evidence for psychological interventions, where an obvious psychogenic cause has not been identified also needs to be undertaken, as it would be relevant for return to normal activity by the individual especially if PNEE are frequent and intrusive. This is also relevant as upto 50-60% cases of PNES do not have an identifiable psychogenic stressor to target management to.

Best wishes,

Dr Anil Israni


30 November 2022

My comment relates to the recommendation about attempting to confirm the diagnosis of PNES with vEEG (when available) - further guidance about the duration of vEEG would be helpful, particularly as clinicians often have to balance the benefits of capturing an episode during EEG to make a 'confirmed' diagnosis with the inconvenience/distress associated with prolonged EEG studies. Specifically, would the recommendation to obtain a video EEG constitute a 1 hour vs. 24 hour study, vs. longer 3-5 days studies?

Dr. Azara Singh


23 November 2022

Very informative paper.

I suggest to rename the condition as: Psychogenic Non-Epileptic Episode/Event, as it doesn’t satisfy the definition of seizure as describe by ILAE.

Anis Jamil


16 November 2022

Many thanks for this nice and helpful paper.
I however have few comments.

You may have epileptic seizures without EEG correlates especially in hyperkinetic seizures and in sleep-related hypermotor epilepsy. It is not exceptional that hyperkinetic seizures have been considered for years as psychogenic because explosive semiology and no epileptiform abnormalities on EEG during the seizure. The EEG is helpful but not mandatory. vEEG is sometimes difficult to interpret because of artifacts and could be over-read in case of interictal epileptiform activities especially in epilepsy children with PNES. Homemade videos are often quite more helpful. We have to remember that the diagnosis of epileptic seizures is essentially clinical. In Box 1, point 4 gives a too strong value to the vEEG. If vEEG does not detect epileptiform activity during a typical event, 'clinically' and 'documented' should be reserved only in non artifact recordings. Furthermore, the ictal recording could be unreadable, but the postictal EEG may give sometimes some information (diffuse slowing, asymmetry of slow waves, etc).

NEAD is a useful term when you start to speak about diagnosis: you can explain organic and functional problems and progressively you arrive with the diagnosis of PNES. For me, PNES is a part of the broader term NEAD. However for numerous parents, the term 'psychogenic' is like an aggression because of the old conception (but still quite alive) that psycho-something is the same as madness or worse as factitious disorder. For that reason I prefer the term 'functional non-epileptic attack disorder'. Functional = non organic, attack is not a seizure. NEAD alone is not sufficient because, i.e., convulsive syncopes may be included. The term 'pseudo' must be avoided because somewhere it is a true attack and because the family has already the tendency to think that if it is not epilepsy, then it is comedy.

These last few years/months, functional disorders are highly frequent in children coming from a war region, and unfortunately, they arrive to my epilepsy consultation because the diagnosis of epilepsy has been previously made and the seizures were not improved by ASM. The treatment is often difficult because of language barrier (at least at the beginning) and the family is also profoundly traumatized. Specific recommandations should be developed for these situations probably more and more frequent.

van Rijckevorsel Kenou


14 November 2022

Thank you for excellent work.

I support comments from Dr Kate Riney re use of word psychogenic and implication of universal causality particularly with changes in DSM5.

Dr Ann Bye


10 November 2022

I congratulate the working group for their effort and commitment to a topic that becomes more relevant every day in daily practice. I think it is important to consider three aspects:

  1. Just as the effort was made in the description of epileptic syndromes about what to do in places with limited resources, I think that some recommendation should be made when these resources are not available with respect to the PNES.
  2. The recommendations correctly emphasize the care of children and adolescents. I think that an emphasis should be placed on a 'comprehensive' approach, but not as a standard package for everyone, but with an emphasis on the individual needs of each case.
  3. Most recommendations on therapeutic interventions fall exclusively on the patient, when in fact the cause of PNES is external to the patient in many cases. If external causes of PNES are identified (bullying, high academic demands, family dysfunction, abuse, etc.), not only the patient is treated, but also her/his environment (school, parents, group of friends, etc.) is intervened. It is possible that what is mentioned is covered under the term 'comprehensive', but the same term does not necessarily explicitly state that the intervention is according to the characteristics of each individual case, nor to factors external to the patient. If the external factor of the PNES is not intervened, it is possible that, despite psychological or psychiatric treatment, the situation does not improve in the patient.

Jaime Carrizosa Moog


8 November 2022

Our experience using the term seizure in PNES when educating and treating patients leads many parents, family, support workers and even doctors to mistake them for an as yet undetected underlying organic cause. These events do not meet the ILAE definition of a seizure.

Angela Spencer


8 November 2022

Concerns regarding the ongoing involvement of specialist in epilepsy after diagnosis. Have found this counter productive especially where PNES is only diagnosis, understand the need for this where epilepsy and PNES occur concurrently. For many families this appears to reinforce that this is still related to epilepsy (as does use of word seizure in PNES) despite clear explanation and signposting. The main problem is a lack of appropriate mental health support and understanding among local services.

Kathryn Coleman


8 November 2022

Thank you for this excellent work. I would ask that you consider using brackets around the word 'psychogenic' in the term used throughout this article ie (Psychogenic) Non-Epileptic (Functional) Seizures, (P)NES. This allows the flexible use of PNES, NES or Functional Seizures. My rationale is that mandating the term 'psychogenic' in the title in children infers that there IS a psychogenic cause in all cases (anxiety, depression, trauma). The term 'psychogenic' means there is a psychological cause rather than a physical one. This is often harmful to families/children as a concept and contributes significantly to disengagement during attempts at explanation in cases where this is not a major factor. The studies you have reviewed have confirmed these are frequently present, and may be a causal factor for some children, but not in every case. In many cases these are consequences of the attacks rather than causing them, and psychological health can be worsened by how patients are treated/managed in the health service - patients are often excluded from usual health care supports and treated as if they are malingering. In some children, developmental factors can be the main underlying factor - learning difficulties, ADHD, ASD phenotypes (or alternatively high IQ brains are predisposed). These are not 'psychogenic' disorders, they are biological developmental disorders. There is a wealth of clear published literature confirming that brain networks in individuals at risk of functional neurological symptom disorder (including seizure-like attacks) are different biologically (physically or functionally), predisposing them to these attacks, so continuing to mandate use of 'psychogenic' in the term (inferring that there is no biological cause, only a psychological one in all cases) makes it difficult for future research to develop in this space, as researchers have to grapple with a major conflict between the disorder they are studying with a proven biological differences in how these brains work, and a term that implies the opposite. Evidence base for functional disorders has moved on, DSM-5 criteria for these disorders was updated to remove a requirement for psychological stressors/comorbidities as this was not proven in all cases and the neurobiological differences confirmed in studies. It would be good for this ILAE paper to reflect this better in 2022.

For neurobiological basis see for example: www.ncbi.nlm.nih.gov/pmc/articles/PMC7293766/

I noted that the survey you completed on the term did not result in any positive agreement to continue using a term with 'psychogenic' (there was no positive argument to do so).

I was particularly concerned through the article that in many places the term PNES was replaced simply by the word 'psychogenic' alone. For example 'if events are psychogenic in nature', 'events thought to be psychogenic in origin'. It would be better to replace 'psychogenic' in these locations (four times, I believe) with PNES/(P)NES, again for the same reason - there is no mandatory requirement for or proven psychological cause in all cases.

Lastly, you have described the term 'functional' as synonymous with 'non physiological', 'functional (and not physiologic)'. Functional does not mean 'not physiological'. Functional neurological symptom disorder has a clear definition, and as noted above has increasingly identified physiological basis, perhaps the correct definition of FNSD is best addressed properly in the article to avoid confusion.

With much appreciation for an otherwise excellent piece of work, with a small adjustment requested to improve clarification and avoid confusion for this complex but common entity in our practice.

Kate Riney