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The Financial Burden of Functional Neurological Disorders

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Abstract

Purpose of Review Functional neurological disorder (FND) is a common and severely debilitating condition lacking clinical ownership, existing between neurology and psychiatry. This article reports the findings of recent research investigating the economic costs of FND diagnosis and management. We define what the costs are, why they exist, and suggest actionable steps to reduce them. Recent Findings The financial burden of FND exists across the globe characterized by high healthcare utilization resulting in exorbitant direct and indirect costs for the patient, healthcare system, and society. Inadequate medical education and stigmatization of the disorder prolong the time to diagnosis, during which cyclical utilization of inpatient and emergency department services drive up costs. Despite being cost-effective, lack of accessible treatment compounds the issue, leaving patients without a reliable exit. Summary Recent findings support an increased awareness and the need for a cultural shift to overcome the financial burden associated with this underserved population.
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Current Neurology and Neuroscience Reports (2023) 23:637–643
https://doi.org/10.1007/s11910-023-01298-8
REVIEW
The Financial Burden ofFunctional Neurological Disorders
MeaganWatson1· JaredWoodward1· LauraA.Strom1
Accepted: 28 August 2023 / Published online: 11 September 2023
© The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature 2023
Abstract
Purpose of Review Functional neurological disorder (FND) is a common and severely debilitating condition lacking clinical
ownership, existing between neurology and psychiatry. This article reports the findings of recent research investigating the
economic costs of FND diagnosis and management. We define what the costs are, why they exist, and suggest actionable
steps to reduce them.
Recent Findings The financial burden of FND exists across the globe characterized by high healthcare utilization result-
ing in exorbitant direct and indirect costs for the patient, healthcare system, and society. Inadequate medical education and
stigmatization of the disorder prolong the time to diagnosis, during which cyclical utilization of inpatient and emergency
department services drive up costs. Despite being cost-effective, lack of accessible treatment compounds the issue, leaving
patients without a reliable exit.
Summary Recent findings support an increased awareness and the need for a cultural shift to overcome the financial burden
associated with this underserved population.
Keywords Functional neurological disorder· FND· Conversion disorder· Finances· Healthcare economics· Healthcare
costs
Introduction
Functional Neurological Disorder (FND) is a common
condition that few know about and even fewer believe in
and truly understand. With an estimated prevalence of 50
per 100,000, FND is recognized as the second-most com-
mon reason for presentation to outpatient neurology clin-
ics, worldwide [1, 2]. The disorder represents a spectrum
of symptoms which outwardly appear like other neurologi-
cal diseases (e.g., epilepsy) but do not originate from the
same neuropathology. Instead, FND is a multi-network brain
disorder where neural circuitry between and within brain
regions is disrupted, thought to be associated with a com-
bination of factors including, childhood trauma, complex
psychopathology, and present environment, among others [3,
4]. We cannot predict who will develop FND, but we know
the onset is more common in Caucasian females, in their
20s and 30s, who are primarily of low socioeconomic status
[2, 5, 6••]. Historically, the disorder has been approached
by clinicians using an exclusion mindset, first ruling out
all other possible medical explanations for the symptom’s
etiology [7]. Only when brain imaging is clear, diagnostic
neurophysiology studies are normal, and blood tests return
negative, does FND become a real possibility. Some clini-
cians continue investigations with costly gene panels and
immunotherapy trials, manifesting in a medical odyssey
based around a single biological explanation [8]. These
seemingly excessive investigations are more common than
they should be as FND is a recognized diagnosis in the diag-
nostic statistical manual (DSM) and functional MRI studies,
albeit with small sample sizes, show significant differences
in the brains of persons with FND compared to controls [3].
Reported differences in neural circuitry explain deficiencies
in persons suffering with FND. Experts suggest we pres-
ently have enough supporting evidence to safely transition
from a “rule-out” to a”rule-in” diagnostic approach due to
the reliability of a clinical exam [9]. An additional critical
factor influencing this new ideology is the unprecedented
healthcare utilization that results from a “rule out” approach
[8]. This review aims to summarize the most recent literature
discussing the financial burden of FND delineating what the
* Meagan Watson
Meagan.watson@cuanschutz.edu
1 Department ofNeurology, University ofColorado, Aurora,
CO, USA
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... 1,2 FND is the most common cause of referral for neurology clinics after headache, 3 with a huge socioeconomic impact on health systems. [4][5][6] Among the FND spectrum, functional seizures and functional movement disorders (FMDs) are the most frequent manifestations. FMDs have shown a similar impact on disability and quality of life than organic movement disorders. ...
Article
Importance Functional movement disorders (FMDs) are frequent and disabling neurological disorders with a substantial socioeconomic impact. Few randomized studies have analyzed the effectiveness of combined physiotherapy and psychotherapy in patients’ quality of life. Objective To assess the efficacy of multidisciplinary treatment (physiotherapy plus cognitive behavioral therapy) in FMDs. Design, Setting, and Participants This was a parallel, rater-blinded, single-center, randomized clinical trial. Recruitment took place from June 2022 to April 2023, and follow-up visits were performed at months 3 and 5, concluding in October 2023. Participants were recruited from a national referral center for movement disorders: the Movement Disorders Unit from the Hospital Universitario Virgen Rocio in Seville, Spain. Patients had to be 18 years or older with a confirmed FMD diagnosis and capable of giving consent to participate. Patients who did not meet eligibility criteria or refused to participate were excluded. Any uncontrolled psychiatric disorder was considered an exclusion criterion. Interventions Patients were randomly assigned, in a ratio of 1:1 to multidisciplinary treatment (physiotherapy plus cognitive behavioral therapy), or a control intervention (psychological support intervention). Main Outcomes and Measures Primary outcomes: between-group differences in changes from baseline to month 3 and month 5 in patients’ quality of life (EQ-5D-5L score: EQ Index and EQ visual analog scale [EQ VAS]; and 36-Item Short-Form Survey Physical Component Summary [SF-36 PCS] and SF-36 Mental Component Summary [MCS]). Linear mixed models were applied, controlling by baseline severity and applying Bonferroni correction. Results Of 70 patients screened with an FMD, 40 were enrolled (mean [SD] age, 43.5 [12.8] years; age range, 18-66 years; 32 female [80%]; mean [SD] age at FMD onset, 38.4 [12.1] years), and 38 completed all the follow-up visits and were included in the analysis for primary outcomes. Multidisciplinary treatment improved SF-36 PCS with a mean between-group difference at 3 months of 4.23 points (95% CI, −0.9 to 9.4 points; P = .11) and a significant mean between-group difference at 5 months of 5.62 points (95% CI, 2.3-8.9 points; P < .001), after multiple-comparisons adjustment. There were no significant differences in other quality-of-life outcomes such as SF-36 MCS (mean between-group difference at 3 and 5 months: 0.72 points; 95% CI, −5.5 to 7.0 points; P = .82 and 0.69 points; 95% CI, 2.3-8.9 points; P = .83, respectively), EQ VAS (9.34 points; 95% CI, −0.6 to 19.3 points; P = .07 and 13.7 points; 95% CI, −1.7 to 29.0 points; P = .09, respectively) and EQ Index (0.001 point; 95% CI, −0.1 to 0.1 point; P = .98 and 0.08 points; 95% CI, 0-0.2 points; P = .13, respectively). At months 3 and 5, 42% and 47% of patients, respectively, in the multidisciplinary group reported improved health using the EQ-5D system, compared with 26% and 16% of patients, respectively, in the control group. Conclusions and Relevance Results show that multidisciplinary treatment (physiotherapy plus cognitive behavioral therapy) effectively improves FMD symptoms and physical aspects of patients’ quality of life. Further studies must be performed to evaluate the potential cost-effectiveness of this approach in FMD. Trial Registration ClinicalTrials.gov Identifier: NCT05634486
... Establishing the seizure reduction effectiveness of Re-PROGRAM may facilitate the uptake of this scalable intervention, which can be widely disseminated. The cost burden associated with FS is similar to that of epilepsy [45][46][47] and eclipses that of refractory epilepsy in emergency settings. 48 As such, innovative, nonpharmacological interventions such as Re-PROGRAM should be evaluated for their cost effectiveness. ...
Article
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Functional gait disorders (FGDs) are a disabling subset of Functional Neurological Disorders in which presenting symptoms arise from altered high-level motor control. The dual-task paradigm can be used to investigate mechanisms of high-level gait control. The study aimed to determine the objective measures of gait that best discriminate between individuals with FGDs and healthy controls and the relationship with disease severity and duration. High-level spatiotemporal gait outcomes were analyzed in 87 patients with FGDs (79.3% women, average age 41.9±14.7 years) and 48 healthy controls (60.4% women, average age 41.9±15.7 years) on single and motor, cognitive, and visual-fixation dual tasks. The area under the curve (AUC) from the receiver operator characteristic plot and the dual-task effect (DTE) were calculated for each measure. Dual-task interference on the top single-task gait characteristics was determined by two-way repeated measures ANOVA. Stride time variability and its standard deviation (SD) failed to discriminate between the two groups in single and dual-task conditions (AUC<0.80 for all). Significant group x task interactions were observed for swing time SD and stride time on the cognitive dual tasks (p<0.035 for all). Longer disease duration was associated with poor gait performance and unsteadiness in motor and cognitive DTE (p<0.003) but improvement in stride length and swing time on the visual dual tasks (p<0.041). Our preliminary findings shed light on measures of gait automaticity as a diagnostic and prognostic gait biomarker and underline the importance of early diagnosis and management in individuals with FGDs.
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Functional dizziness (FD) is the most common form of chronic dizziness, accounting for up to 20% of all cases of chronic dizziness and is diagnosed in 40% of patients referred to specialized clinics. This article discusses the pathogenesis, clinical manifestations and diagnostic features of FD. An overview of standard and new methods of drug therapy and methods of vestibular rehabilitation for patients with FD is provided. Experts conclude that FD, currently defined as persistent postural perceptual dizziness (PPPD), is the most common cause of chronic non-rotational dizziness. PPPD is thought to be multifactorial; central and peripheral vestibular disorders, anxiety disorders and traumatic brain injury are noted as possible precipitating causes. The diagnosis of PPPD is based on the presence of a feeling of unsteadiness or non-rotational dizziness occurring more than half of the days over a period of three months or longer, when other possible causes of dizziness have been ruled out. When managing a patient with PPPD, it is necessary to inform the patient about the nature of the disease, provide a patient with an education program and apply psychotherapy and vestibular rehabilitation methods. The use of buspirone prolonged-release tablets (Vespirate®) and vestibular rehabilitation in clinical practice is discussed.
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Background Psychogenic non-epileptic seizures (PNES) resemble epileptic seizures and are often misdiagnosed as epilepsy. Objective To investigate the frequency of PNES and to calculate the economic burden of the patients who admitted to video-electroencephalographicmonitoring (VEM) to obtain a diagnosis of epilepsy in order to apply for disability retirement. Methods The present retrospective study included 134 patients who required disability reports between 2013 and 2019 and had their definite diagnoses after VEM. Following VEM, the patients were divided into three groups: epilepsy, PNES, and epilepsy + PNES. Results In total, 22.4% (n = 30) of the patients were diagnosed with PNES, 21.6% (n = 29) with PNES and epilepsy, and 56% (n = 75), with epilepsy. The frequency of PNES among all patients was of 44% (n = 59). In patients with PNES alone, the annual cost of using anti-seizure medication was of 160.67 ± 94.04 dollars; for psychostimulant drugs, it was of 148.3 ± 72.48 dollars a year; and the mean direct cost for diagnostic procedures was of 582.9 ± 330.0 (range: 103.52–1601.3) dollars. Conclusions Although it is challenging to determine the qualitative and quantitative total cost in these patient groups, early diagnosis and sociopsychological support will reduce the additional financial burden on the health system and increase the quality of life of the patients.
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Background and Objectives Projections from recent studies suggest that by 2025, there will not be enough neurologists to meet the demand in 41 states. In this study, we investigate the financial impact and improved access to care for persons with epilepsy that is possible by implementing a multidisciplinary treatment clinic for persons with functional seizures (FS), previously referred to as psychogenic nonepileptic seizures, thus separating those patients out of an epilepsy clinic. Methods This observational retrospective study used real-time data of 156 patients referred to an FS clinic integrated into a tertiary care epilepsy center to simulate its effect on epilepsy division access and finances. Access was measured using simulations of the number of return patient visits (RPVs) and new patient visits (NPVs) of patients with FS to a dedicated epilepsy clinic, based on survey results inquiring about the standard of care without the FS clinic. Finances were simulated using the resultant access multiplied by respective wRVU and reimbursement per CPT code. Results Treatment of 156 patients with FS in a multidisciplinary FS clinic resulted in 343 newly opened NPVs, reimbursement of $102,000, and 1,200 wRVUs in our dedicated epilepsy clinic. There were 686 RPVs, $103,000 in reimbursement, and 1,320 wRVUs. Relative to the total number of NPVs with epilepsy clinic epileptologists, 343 NPVs represent a biennial 15.5% increase in available new patient visit slots. Discussion Our findings describe the financial viability of integrating a treatment clinic for persons with FS by directing them to FS-specialized treatment and thereby increasing access for patients with probable epilepsy to the dedicated epilepsy clinic. This study provides a potential solution to the national mismatch in the supply and demand of neurologists and an initial framework to use for those who wish to establish or integrate FS services in their institution.
Article
Purpose: We conducted an observational study to investigate the opinions of neurologists and psychiatrists all around the world who are taking care of patients with seizures [epilepsy and functional seizures (FS)]. Methods: Practicing neurologists and psychiatrists from around the world were invited to participate in an online survey. On 29th September 2022, an e-mail including a questionnaire was sent to the members of the International Research in Epilepsy (IR-Epil) Consortium. The study was closed on 1st March 2023. The survey, conducted in English, included questions about physicians' opinions about FS and anonymously collected data. Results: In total, 1003 physicians from different regions of the world participated in the study. Both neurologists and psychiatrists identified "seizures" as their preferred term. Overall, the most preferred modifiers for "seizures" were "psychogenic" followed by "functional" by both groups. Most participants (57.9%) considered FS more difficult to treat compared to epilepsy. Both psychological and biological problems were considered as the underlying cause of FS by 61% of the respondents. Psychotherapy was considered the first treatment option for patients with FS (79.9%). Conclusion: Our study represents the first large-scale attempt of investigating physicianś attitudes and opinions about a condition that is both frequent and clinically important. It shows that there is a broad spectrum of terms used by physicians to refer to FS. It also suggests that the biopsychosocial model has gained its status as a widely used framework to interpret and inform clinical practice on the management of patients.
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Unprecedented knowledge of the brain is inevitably contributing to the convergence of neurology and psychiatry. However, clinical training continues to follow a divergent approach established in the 19th century. An etiological approach will continue to shift more psychiatric patients to the care of neurologists who are untrained in psychiatric management. At the same time, this new era of diagnostic biomarkers and neuroscience-based precision treatments requires skills not readily available to those trained in psychiatry. The challenges in training the next generation of doctors include establishing competence involving aspects of the whole brain, fostering the subspecialized expertise needed to remain current, and developing programs that are feasible in duration and practical in implementation. A new 4-year residency training program proposed in this article could replace existing residency programs. The program includes 2 years of common and urgent training in various aspects of neurology and psychiatry followed by 2 years of elective subspecialty tracks. The concept is similar to internal medicine residencies and fellowships. No changes to existing departmental structures are necessary. In concert with the emerging biological approach to the brain, "brain medicine" is proposed as a new name to denote this practice in the simplest terms: a focus on all aspects of the brain.
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Background: Patients with functional neurological (conversion) disorder (FND) have historically been difficult to treat. Outcomes have been studied in research trials, documenting improvements; however, limited information is available from a community-treated FND cohort. Objectives: We aimed to examine clinical outcomes in outpatients with FND treated with the Neuro-Behavioral Therapy (NBT) approach. These uncontrolled setting treatment data could complement more structured clinical studies results. Methods: We conducted a retrospective chart review of consecutive patients diagnosed with FND, ages 17 to 75, who were treated with the NBT workbook at the Rhode Island Hospital Behavioral Health clinic between 2014 and 2022. NBT consisted of 45-minute, individual, outpatient sessions, in clinic or via telehealth with one clinician. Global Assessment of Functioning (GAF), and Clinical Global Impression (CGI) -Severity, and -Improvement were scored for every appointment. Results: Baseline characteristics are available for 107 patients. Mean age at FND symptom onset was 37 years. Patients had a mix of FND semiologies, which included Psychogenic Nonepileptic Seizures (71%), Functional Movement Disorder (24.3%), Functional Sensory Disorder (14%), Functional Weakness (6.5%), and Functional Speech Disorder (5.6%). Clinical evaluation scores revealed improvements over time. Conclusions: We describe a well-characterized sample of patients with various and mixed FND semiologies, who received manualized therapy, NBT, in an outpatient clinic. Patients had similar psychosocial profiles to those in clinical studies and displayed improvement in clinical measures. These results demonstrate the practicability of NBT for motor FND semiologies and for PNES, in a "real-world" outpatient practice, extending care beyond structured clinical trials.
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Background: Successful management for functional neurological disorder (FND) requires multidisciplinary involvement starting with providing a definitive diagnosis. Objectives: To observe clinical management of patients with FND during hospital admission. Methods: A prospective observational study was conducted over six Australian hospitals over a 4-month period. Data collected included patient demographics, communication of the diagnosis of FND, access to the multidisciplinary team, hospital length of stay (LOS), and emergency department (ED) presentations. Results: A total of 113 patients were included. Median LOS was 6 (interquartile range, 3-14) days. Thirty-five (31%) presented to ED with 9 (8%) re-presenting two or more times after hospital discharge. Total hospital utilization cost was AUD$3.5million. A new diagnosis was made in 82 (73%) patients. Inpatient referrals were made to neurology (81, 72%), psychology (29, 26%), psychiatry (27, 24%), and physiotherapy (100, 88%). Forty-four (54%) were not told of the diagnosis. Twenty (24%) did not have their diagnosis documented in their medical record. Of the 19 (23%) not reviewed by neurology on non-neurosciences wards, 17 (89%) did not have their diagnosis communicated and 11 (58%) did not have it documented. Twenty-five (42%) referred to neurology were not provided with a diagnosis. Conclusions: Current gaps in service provision during inpatient hospital admissions in Australia include low rates of communication of a diagnosis, particularly when patients are not located on a neurosciences ward, and limited and variable access to inpatient multidisciplinary teams. Specialized services are needed to improve education, clinical pathways, communication, and health outcomes while reducing healthcare system costs.
Article
Background and Objective The objectives of this study were to investigate health care utilization costs of patients with video-electroencephalography (VEEG)–confirmed functional seizures (FS), determine whether patients who received a satisfactory functional neurologic disorder (FND) diagnosis explanation had reduced health care utilization compared with those with a poor explanation; and to quantify the overall health care costs 2 years prediagnosis and postdiagnosis for those receiving a different explanation. Methods Patients with VEEG-confirmed pure FS (pFS) or mixed (functional seizure plus epileptic seizures) diagnosis between July 1, 2017, and July 1, 2019, were evaluated. Explanation of the diagnosis was determined “unsatisfactory” or “satisfactory” using self-developed criteria, and health care utilization data were collected using an itemized list. The subsequent costs 2 years post-FND diagnosis were compared with those 2 years before, and cost outcomes were compared between both groups. Results In patients who received a satisfactory explanation (n = 18), total health care costs were reduced from $169,803 to $117,133 USD (−31%). An increase in costs was found ($73,430 to $186,553 USD = +154%) in patients with pPNES after an unsatisfactory explanation (n = 7). On an individual level, 78% with a satisfactory explanation saw a reduction in total health care costs per year (mean $5,111 USD to $1,728 USD), and in 57%, an unsatisfactory explanation led to an increase (mean $4,425 to $20,524 USD). A similar effect was seen from explanation on patients with a dual diagnosis. Discussion The method of communicating an FND diagnosis has a significant impact on subsequent health care utilization. Those receiving satisfactory explanations demonstrated reduced health care utilization, whereas an unsatisfactory explanation resulted in additional expenses.
Article
Patients with psychogenic nonepileptic seizures (PNES) represent a distinct, challenging group among those with functional neurologic symptom (conversion) disorders and involve a complex set of symptoms and comorbidities, best evaluated and treated by a multidisciplinary team of clinicians. Multidisciplinary, collaborative care is becoming more common, using evidence-based treatment. Outpatient neurology clinics at sites not currently treating these patients hold potential for providing such a model of care, with coordination of services. Best practice care should encourage the integration of neurology and mental health professionals to improve communication among clinicians and with patients, allowing for better patient care and symptomatic outcomes.