Outcome measurement in functional neurological disorder: a systematic review and recommendations.

OBJECTIVES: We aimed to identify existing outcome measures for functional neurological disorder (FND), to inform the development of recommendations and to guide future research on FND outcomes. METHODS: A systematic review was conducted to identify existing FND-specific outcome measures and the most common measurement domains and measures in previous treatment studies. Searches of Embase, MEDLINE and PsycINFO were conducted between January 1965 and June 2019. The findings were discussed during two international meetings of the FND-Core Outcome Measures group. RESULTS: Five FND-specific measures were identified-three clinician-rated and two patient-rated-but their measurement properties have not been rigorously evaluated. No single measure was identified for use across the range of FND symptoms in adults. Across randomised controlled trials (k=40) and observational treatment studies (k=40), outcome measures most often assessed core FND symptom change. Other domains measured commonly were additional physical and psychological symptoms, life impact (ie, quality of life, disability and general functioning) and health economics/cost-utility (eg, healthcare resource use and quality-adjusted life years). CONCLUSIONS: There are few well-validated FND-specific outcome measures. Thus, at present, we recommend that existing outcome measures, known to be reliable, valid and responsive in FND or closely related populations, are used to capture key outcome domains. Increased consistency in outcome measurement will facilitate comparison of treatment effects across FND symptom types and treatment modalities. Future work needs to more rigorously validate outcome measures used in this population

The role of evidence-based guidelines in the diagnosis and treatment of functional neurological disorder

Evidence-based clinical practice guidelines, based on systematic reviews of existing evidence, play an important role in improving and standardizing the quality of patient care in many medical and psychiatric disorders, and could play an important role in the diagnosis and treatment of functional seizures and other functional neurological disorder (FND) subtypes. There are several reasons to think that evidence-based guidelines might be especially beneficial for the management of FND. In particular, the interdisciplinary and multidisciplinary teamwork necessary for the care of people with FND, the current lack of formal clinical training in FND, and the rapidly expanding body of evidence relating to FND all make guidelines based on systematic literature reviews especially valuable. In this perspective piece, we review clinical practice guidelines, their advantages and limitations, the reasons why evidence-based guidelines might be especially beneficial in the diagnosis and treatment of FND, and the steps that must be taken to create such guidelines for FND. We propose that professional organizations such as the American Academy of Neurology and the American Psychiatric Association undertake guideline development, ideally to create a co-authored or jointly endorsed set of guidelines that can set standards for interdisciplinary care for neurologists and mental health clinicians alike

Driving a motor vehicle and psychogenic nonepileptic seizures: ILAE Report by the Task Force on Psychogenic Nonepileptic Seizures

Objectives This International League Against Epilepsy (ILAE) Report: (a) summarizes the literature about “driving and psychogenic nonepileptic seizures (PNES)”; (b) presents the views of international experts; and (c) proposes an approach to assessing the ability of persons with PNES (PwPNES) to drive. Methods Phase 1: Systematic literature review. Phase 2: Collection of international expert opinion using SurveyMonkey®. Experts included the members of the ILAE PNES Task Force and individuals with relevant publications since 2000. Phase 3: Joint analysis of the findings and refinement of conclusions by all participants using email. As an ILAE Report, the resulting text was reviewed by the Psychiatry Commission, the ILAE Task Force on Driving Guidelines, and Executive Committee. Results Eight studies identified by the systematic review process failed to provide a firm evidence base for PNES‐related driving regulations, but suggest that most health professionals think restrictions are appropriate. Twenty‐six experts responded to the survey. Most held the view that decisions about driving privileges should consider individual patient and PNES characteristics and take account of whether permits are sought for private or commercial driving. Most felt that those with active PNES should not be allowed to drive unless certain criteria were met and that PNES should be thought of as “active” if the last psychogenic seizure had occurred within 6 months. Significance Recommendations on whether PwPNES can drive should be made at the individual patient level. Until future research has determined the risk of accidents in PwPNES a proposed algorithm may guide decisions about driving advice

Anxiety and avoidance in psychogenic nonepileptic seizures: the role of implicit and explicit anxiety

This study examined implicit and explicit anxiety in individuals with epilepsy and psychogenic nonepileptic seizures (PNESs) and explored whether these constructs were related to experiential avoidance and seizure frequency. Based on recent psychological models of PNESs, it was hypothesized that nonepileptic seizures would be associated with implicit and explicit anxiety and experiential avoidance. Explicit anxiety was measured by the State-Trait Anxiety Inventory; implicit anxiety was measured by an Implicit Relational Assessment Procedure; and experiential avoidance was measured with the Multidimensional Experiential Avoidance Questionnaire. Although both groups with epilepsy and PNESs scored similarly on implicit measures of anxiety, significant implicit–explicit anxiety discrepancies were only identified in patients with PNESs (p < .001). In the group with PNESs (but not in the group with epilepsy), explicit anxiety correlated with experiential avoidance (r = .63, p < .01) and frequency of seizures (r = .67, p < .01); implicit anxiety correlated with frequency of seizures only (r = .56, p < .01). Our findings demonstrate the role of implicit anxiety in PNESs and provide additional support for the contribution of explicit anxiety and experiential avoidance to this disorder

Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection

IMPORTANCE: SARS-CoV-2 infection is associated with persistent, relapsing, or new symptoms or other health effects occurring after acute infection, termed postacute sequelae of SARS-CoV-2 infection (PASC), also known as long COVID. Characterizing PASC requires analysis of prospectively and uniformly collected data from diverse uninfected and infected individuals. OBJECTIVE: To develop a definition of PASC using self-reported symptoms and describe PASC frequencies across cohorts, vaccination status, and number of infections. DESIGN, SETTING, AND PARTICIPANTS: Prospective observational cohort study of adults with and without SARS-CoV-2 infection at 85 enrolling sites (hospitals, health centers, community organizations) located in 33 states plus Washington, DC, and Puerto Rico. Participants who were enrolled in the RECOVER adult cohort before April 10, 2023, completed a symptom survey 6 months or more after acute symptom onset or test date. Selection included population-based, volunteer, and convenience sampling. EXPOSURE: SARS-CoV-2 infection. MAIN OUTCOMES AND MEASURES: PASC and 44 participant-reported symptoms (with severity thresholds). RESULTS: A total of 9764 participants (89% SARS-CoV-2 infected; 71% female; 16% Hispanic/Latino; 15% non-Hispanic Black; median age, 47 years [IQR, 35-60]) met selection criteria. Adjusted odds ratios were 1.5 or greater (infected vs uninfected participants) for 37 symptoms. Symptoms contributing to PASC score included postexertional malaise, fatigue, brain fog, dizziness, gastrointestinal symptoms, palpitations, changes in sexual desire or capacity, loss of or change in smell or taste, thirst, chronic cough, chest pain, and abnormal movements. Among 2231 participants first infected on or after December 1, 2021, and enrolled within 30 days of infection, 224 (10% [95% CI, 8.8%-11%]) were PASC positive at 6 months. CONCLUSIONS AND RELEVANCE: A definition of PASC was developed based on symptoms in a prospective cohort study. As a first step to providing a framework for other investigations, iterative refinement that further incorporates other clinical features is needed to support actionable definitions of PASC

Neurology Residents\u27 Education in Functional Seizures

We report a survey of neurology residency program directors (PDs) and recent neurology residency graduates about the education provided during residency on functional seizures (FS), a subtype of functional neurological disorder (FND). The purpose of our study was to assess the education gap for neurology residents about FS since patients with FS are frequently seen by neurologists, who typically conduct the evaluation and share the findings with the patient. A survey was sent to 93 Neurology residency program directors and 71 recent graduates. We obtained a low response rate of 17%. Results of the survey revealed that the most frequent settings for education on FS were within a clinical rotation in the Epilepsy Monitoring Unit (68.8% of PDs and 88.7% of recent graduate respondents) and via a single didactic lecture (81.3% of PDs and 80.3% of recent graduate respondents). The majority of programs did not provide a curriculum for training and feedback on best practices in communicating the diagnosis or on evidence-based treatments. Eighteen percent of neurology residents reported not learning how to communicate the diagnosis of FS to patients, while 77% responded that they were not taught about treatment. These results illustrate a curriculum gap in what neurology residents are taught about diagnosis and management of FS (and FND). We propose a standardized model that can be adapted in residencies

Alexithymia in schizophrenia

Changes in emotional and social behavior are considered to be amongst the most common and debilitating consequences of schizophrenia. However, little is known of the effects of schizophrenia on alexithymia, which refers to impairment in aspects of understanding emotions. In the current study, participants with schizophrenia (n = 29) and nonclinical controls (n = 30) completed self-report and performance-based measures of this construct, in addition to measures of cognitive functioning, clinical symptomatology, and negative affect. The results indicated that individuals with schizophrenia showed increased alexithymia as indexed by the performance task, with these difficulties related to cognitive functioning, and the specific clinical symptom of alogia. However, although the correlation between self-reported alexithymia and negative affect in the schizophrenia group was congruent with prior empirical research and theory, there were no group differences in perceived levels of alexithymia. It is suggested that alexithymia may not be affected per se in schizophrenia (as indicated by the lack of group differences on the self-report measure of this construct), but that schizophrenia-related difficulties do emerge in contexts where cognitive demands are incremented. © 2010 Psychology Press

How to do things with words : two seminars on the naming of functional (psychogenic, non-epileptic, dissociative, conversion, …) seizures

Amongst the most important conditions in the differential diagnosis of epilepsy is the one that manifests as paroxysms of altered behaviour, awareness, sensation or sense of bodily control in ways that often resemble epileptic seizures, but without the abnormal excessive or synchronous electrical activity in the brain that defines these. Despite this importance, there remains little agreement – and frequent debate – on what to call this condition, known inter alia as psychogenic non-epileptic seizures (PNES), dissociative seizures (DS), functional seizures (FS), non-epileptic attack disorder (NEAD), pseudoseizures, conversion disorder with seizures, and by many other labels besides. This choice of terminology is not merely academic – it affects patients’ response to and understanding of their diagnosis, and their ability to navigate health care systems.This paper summarises two recent discussions hosted by the American Epilepsy Society and Functional Neurological Disorders Society on the naming of this condition. These discussions are conceptualised as the initial step of an exploration of whether it might be possible to build consensus for a new diagnostic label