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Social aspects of life in patients with functional seizures: Closing the gap in the biopsychosocial formulation
Abstract
The human, as a biological system, is an open system embedded within larger systems —including the family, culture, and socio-political environment. In this context, a patient with functional seizures (FS) is embedded in relationships, educational/professional institutions, culture, and society. Both connection to these broader systems and the quality of these connections, as well as the soundness of each system in and of itself, influence the health and well-being of patients in positive or negative ways. The social aspects of life are important determinants of health and quality of life across the lifespan. The current narrative review brings out several overarching themes in patients with FS. Sections on attachment, marriage, social networking, and stigma highlight the central roles of supportive and affirmative relationships across the lifespan. The section on education underscores the importance of keeping children and youth with FS connected within their school environments, as well as managing any barriers – learning difficulties, school response to FS events, stigma, etc.—that can diminish this connection. Finally, the sections on employment and driving highlight the value of being an active participant in one’s society. In summary, FS impacts patients across most social aspects of life domains regardless of age — factors that are important when developing biopsychosocial formulations. This review concludes that the multidisciplinary management of FS requires careful assessment of social aspects of life in patients which can then be targeted for treatment, to improve their quality of life, facilitating recovery, and reducing the risk of relapse.
... While systematic reviews related to FS investigating factors such as quality of life [31], or HCPs' perceptions of FS [32] exist, none focus specifically on stigma in FS. In addition, while some narrative reviews have focused on narrower subsets of stigma or factors that are closely related to stigma in FS (e.g., social aspects of life in people with FS [33], shame [34], etc.), to date none have systematically reviewed the available literature on stigma in FS covering the full breadth of the ways and contexts in which stigma can play out for this population. ...
... Number of countries represented in included data sources by country income level World Bank Classification [47] Countries Low-income countries (14) Egypt [27], Georgia [27,48], Ghana [27], Guatemala [49], India [27], Morocco [27], Nicaragua [49], Pakistan [27], Philippines [27], Republic of Moldova [27], Syria [27], Tanzania [27], Ukraine [27], Zambia [27] Middle-income countries (33) Brazil [27,49], Bolivia [49], Bosnia [27], China [27], Colombia [27,48,49], Costa Rica [27,49], Croatia [27], Cuba [49], Dominican Republic [49], Herzegovina [27], Honduras [49], Iran [41,48,50], Iraq [27,48], Jordan [27], Kyrgyzstan [27], Lebanon [27], Macedonia [27], Malaysia [27], Mexico [49], Montenegro [27], Namibia [51,52], Panama [49], Paraguay [49], Peru [27,49], Russia [48], Serbia [27], South Africa [25,27,53,54], Thailand [27], Tunisia [27], Turkey [27], Venezuela [48,49] High-income countries (38) Arabia [27], Argentina [27,48,49], Australia [27,55,56], Austria [27], Canada [27,[55][56][57], Chile [27,49], Cyprus [27], Denmark [27,58], Finland [27], France [27,48,59,60], Germany [27], Hungary [27], Iceland [61], Ireland [27,55,56], Israel [27], Italy [41,48,62], Japan [27], Kuwait [27], Latvia [27], Lithuania [27], New Zealand [27], Saudi Arabia [27,48], Spain [27], Switzerland [27], Malta [27], Netherlands [27], New Zealand [27], Norway [2,55,56,63,64], Poland [27], Qatar [27,48], Saudi Arabia [48], South Korea [27], Sweden [65], Switzerland [27], Taiwan [27], UK [12,15,22,26,27,41,55,56,[66][67][68][69][70][71][72][73][74][75][76][77][78], United Arab ...
... In adding to the above-mentioned themes, literature suggested that FS has a profound impact on patients' lives. This was suggested in 20 of the 70 data sources [12][13][14][15]22,26,33,52,53,56,57,63,64,67,68,75,77,84,96,103]. Three subthemes emerged here: a) social impact, b) socio-economic impact, and c) patients with FS having more perceived stigma than patients with epilepsy. ...
Objective
: The purpose of this scoping review was to explore the extent, range and nature of knowledge on stigma in functional seizures (FS).
Methods
: This scoping review was conducted in accordance with the Joanna Briggs Institute Manual for Evidence Synthesis (JBIMES) guidelines and the five-step framework by Arksey and O'Malley. We searched for data sources written in English using MEDLINE, Scopus, EBSCOhost, Ovid, PubMed, Science Direct, Web of Science, Wiley Online Library, Microsoft Academic, Google Scholar, as well as grey literature sources, with no date limitations up to September 2021. The extracted data were analysed using basic frequency counts and thematic analysis.
Results
: The systematic search yielded a set of 988 relevant data sources, of which 70 met the inclusion criteria. The retrieved sources reflected data from 85 countries and 5949 study participants. The thematic analysis highlighted the prevalence of FS stigma, as well as its potential origins, context and impact on patients and families. The majority of studies were conducted in healthcare settings with healthcare providers, with fewer data sources reporting on family, patient, and broader society perspectives relating to FS stigma.
Conclusion
: Our scoping review suggests that FS stigma is prevalent but remains understudied. We need more research with a specific focus on stigma in FS, and factors that contribute to FS stigma (e.g. culture and context, naming of the condition), as well as accessible interventions and guidelines addressing FS stigma through education and training. Supportive attitudes and knowledge appear to be protective factors against FS stigma.
... Presentations with FND are common in pediatric practice-up to 10% of children presenting to pediatric neurology clinics [4] and up to 20% of children presenting to specialist epilepsy clinics [5]. FND places substantial psychosocial, educational, and financial strains on children and their families and a substantial burden on the health care system [6,7]. Motor FND and functional seizures (FS) 1 are the two most common patterns of FND presentations in children [8,9]. ...
... With the exception of treatment as usual, which varies widely from one institution or provider to another, these approaches are largely biopsychosocial in character [43,44] (see Text Box 1). As such, they are central to the holistic treatment process required to help children who present with FND [6,45]. Under these biopsychosocial approaches, treating clinicians consider the biological, psychological, relational, and school-related factors-and the interactions between them-that contribute to the child's clinical presentation and that may need to be addressed in treatment (see Text Box 2). ...
... Table 1 shows that rates of comorbid mental disorders vary substantially from one cohort to another (22 − 80%) [8,38,61]. As with FND that does not resolve, chronic comorbid mental health conditions are associated with long-term effects on social adjustment and health and well-being [6]. Of the studies reviewed in this article, only one study (from Australia) reported long-term outcomes [38]. ...
Purpose of Review
Functional neurological disorder (FND) is a multi-network brain disorder that encompasses a broad range of neurological symptoms. FND is common in pediatric practice. It places substantial strains on children, families, and health care systems. Treatment begins at assessment, which requires the following: the medical task of making the diagnosis, the interpersonal task of engaging the child and family so that they feel heard and respected, the communication task of communicating and explaining the diagnosis, and the logistical task of organizing treatment.
Recent Findings
Over the past decade, three treatment approaches—Retraining and Control Therapy (ReACT), other cognitive-behavioral therapies, and multidisciplinary rehabilitation—have been evaluated in the USA, Canada, and Australia. Of children treated in such programs, 63 − 95% showed full resolution of FND symptoms. The common thread across the programs is their biopsychosocial approach—consideration of biological, psychological, relational, and school-related factors that contribute to the child’s clinical presentation.
Summary
Current research strongly supports a biopsychosocial approach to pediatric FND and provides a foundation for a stepped approach to treatment. Stepped care is initially tailored to the needs of the individual child (and family) based on the pattern and severity of FND presentation. The level of care and type of intervention may then be adjusted to consider the child’s response, over time, to treatment or treatment combinations. Future research is needed to confirm effective treatment targets, to inform the development of stepped care, and to improve methodologies that can assess the efficacy of stepped-care interventions.
... Furthermore, learning problems and educational difficulties are common among people with FS [36][37][38]. The associations between FS and education have been interpreted in two ways: 1) educational problems and learning disabilities may interact with other risk factors (e.g., adverse childhood experiences) to increase the risk for development of FS, and 2) reduced educational achievement may result from the onset of FS [39]. Finally, people with FS may experience problems in their marriage quality and marital outcomes [39,40]. ...
... The associations between FS and education have been interpreted in two ways: 1) educational problems and learning disabilities may interact with other risk factors (e.g., adverse childhood experiences) to increase the risk for development of FS, and 2) reduced educational achievement may result from the onset of FS [39]. Finally, people with FS may experience problems in their marriage quality and marital outcomes [39,40]. ...
... Social aspects of life are important determinants of health and quality of life (QOL). Therefore, since FS have debilitating effects on patients' lives, they are frequently associated with a decreased QOL in these patients [39], even worse than that in people with epilepsy [14,41,42]. In addition, the caregivers' QOL scores in people with FS are comparable to those of caregivers for people with epilepsy [43]. ...
Functional seizures (FS) are frequently encountered in neurology clinics, often affect young adults, and have significant negative impacts on many aspects of a person’s life. In the current narrative review, we searched the literature regarding some of the consequences of FS (i.e., psychiatric comorbidities, social consequences, costs that are associated with the condition, cognitive impairment in patients with FS, the quality of life of the people with FS, and the increased risk of mortality that is associated with FS). Evidence shows that FS have significant negative consequences, comparable in their magnitude to those affecting patients with epilepsy. The clinical and scientific communities should take steps to address these consequences through clinical care and research that prioritizes, facilitates, and expedites evidence-based diagnosis and treatment for FS.
... While the stories-and our examination of the culture of carecome from pediatric clinical practice, we are aware that similar issues arise in working with adults [9,[11][12][13][14]. In this context, it is likely that the issues and ideas examined in this article have important implications for clinicians treating adults with FND across a range of adult health care systems. ...
... [25] From the perspective of our multidisciplinary group of professionals, the most pressing issue in the field of pediatric FND is to bring about change in the culture and to develop an FNDinformed culture of care so that it reflects current neuroscience research and consciously addresses past prejudices. Pervasive stigma is also a problem in relation to adult patients with FND [9,[11][12][13][14]. Without cultural change, the clinical treatment of FND cannot progress, and patients will continue to receive a different standard-a lower standard-of care. ...
... For example, given that problems at school are a common source of stress for children with FND, a holistic, biopsychosocial evaluation of the child and family needs to carefully explore the role of such problems in the child's presentation. Common difficulties include the following: cognitive difficulties; specific learning problems; feeling unable to cope; working too hard in the context of high expectations; social problems with peers; bullying; and school absenteeism (see Asadi-Pooya et al. [2021] for review) [14]. A biopsychosocial perspective is crucial because problems at school are affected by a variety of interrelated factors: personality; cognitive ability; expectations (others' or one's own); anxiety and other emotional problems; use of coping strategies; family function; social functioning more generally; and parents' responses to their child's complaints [14,23,70]. ...
As members of a multidisciplinary team of professionals who treat children and adolescents with functional neurological (conversion) disorder (FND), we highlight the pressing need to develop an FND-informed culture of care that takes into account recent advances in our understanding of this group of patients. Stories of clinical encounters in health care settings from around the world—told by children and adolescents with FND, their parents, and health professionals—portray an outdated culture of care characterized by iatrogenic stigma, erosion of empathy and compassion within the clinician-patient relationship, and a lack of understanding of FND and its complex neurobiology. After a brief exploration of the outdated culture, we share our counterstories: how we and our colleagues have worked, and continue to work, to create an FND-informed culture in the health systems where we practice. We discuss the therapeutic use of child-friendly language. We also discuss a range of structural, educational, and process interventions that can be used to promote FND-informed beliefs and attitudes, FND-informed clinician-patient encounters, and FND-informed referral processes, treatment pathways, and therapeutic interventions.
... Numerous studies to date have explored the association between psychological trauma and stressors and FS [10,11]. A number of studies have also described the socioeconomic characteristics of patients with FS [12][13][14] and explored the socioeconomic disparities between individuals with FS and epilepsy [15][16][17][18]. However, there remains a paucity of research examining the association between psychological trauma profiles of FS patients and socioeconomic status. ...
... Earlier studies have suggested that unemployment is a pertinent issue among patients with FS [42] and may have an impact on their self-efficacy and quality of life [14]. Our findings suggest that for patients coming from marginalised socioeconomic contexts, the experience of FS is exacerbated by a higher likelihood of unemployment, which subsequently intensifies the challenges of poverty alleviation due to the compounded effects of illness and reduced employment opportunities for these patients. ...
PURPOSE: To date not much is known about the differences, if any, between patients with functional seizures (FS) from different socio-economic backgrounds. We sought to compare the psychological stress and trauma profiles of patients with FS from a private and public hospital in Cape Town, South Africa.
METHODS: Only video-electroencephalography-confirmed patients with FS were eligible for the study. In this retrospective case-control study we collected data on self-reported demographic and psychological stressor/trauma variables using digital patient records starting with the earliest available digital patient record for each hospital.
RESULTS: A total of 321 patients from a private hospital and 68 patients from a public hospital were included in the study. Most factors showed no significant differences. However, public hospital patients had higher odds of being older (p=0.002), almost nine times the odds of reporting physical violence by an intimate partner (aOR=8.65, 95% CI [1.70,44.08]), more than eight times the odds of reporting psychological stress in the form of death and/or sickness in the family (aOR=8.56, 95% CI [1.81,40.41]) and almost three times the odds for other general psychosocial stressors (aOR=2.82, 95% CI [1.08,7.42]) compared to those attending the private hospital. They also had half the odds of being female compared to the private hospital patients (aOR=0.47, 95% CI [0.23,0.95]) and 93% fewer odds of reporting coming from an abusive home (aOR=0.07, 95% CI [0.01,0.52]).
CONCLUSION: History and psychological trauma and stressor profiles showed many similarities between the public and private hospital groups; however, some differences were noted and could benefit further exploration and consideration in therapeutic and diagnostic contexts.
... For FND, in particular with regards to clinical management, biopsychosocially-driven diagnosis and treatment has come into scientific focus [1,6,22,23], including outcome criteria [24]. ...
... FND patients show deficits in all four domains of the IMSA, i.e. somatic symptoms, psychological and social problems and have high health care usage. These data emphasize that a biopsychosocial and multidisciplinary perspective is necessary in assessing and treating these patients [6,22,23,28], including treatment outcome [24]. The IMSA seems to have the potential to be a valuable and time effective instrument in this regard, which however has to be proved by longitudinal research. ...
Background:
Functional Neurological Disorder (FND) is considered a biopsychosocial disorder nowadays, with chronicity in >50% of cases. The INTERMED Self-Assessment Questionnaire (IMSA) assesses the various domains and indicates biopsychosocial complexity.
Objective:
FND patients were compared with a sample of psychosomatic (PSM) patients as well as post-stroke patients.
Methods:
The three samples (N = 287 altogether) were largely in inpatient and day clinic psychotherapeutic treatment or inpatient neurological rehabilitation. The IMSA covers all three biopsychosocial domains as well as health care utilisation in the time frame of the past, the present and the future. In addition, affective burden (GAD-7, PHQ-9), somatoform symptoms (PHQ-15), dissociation (FDS) and quality of life (SF-12) were evaluated.
Results:
FND and PSM patients scored highly in the IMSA, with ≥70% regarded as complex, compared to 15% of post-stroke patients. Affective, somatoform and dissociation scores were high in FND and PSM patients. Mental and somatic quality of life were lower in these groups compared to post-stroke patients.
Discussion:
FND patients showed high biopsychosocial strain, similar to a typical sample of inpatient and day clinic, i.e. severely affected, PSM patients, and they were more affected than post-stroke patients. These data emphasize that FND should be evaluated with a biopsychosocial perspective. The IMSA likely represents a valuable tool, which has to be assessed by further longitudinal studies.
... Our team's clinical experience is that young people who do distance education or who do not go back to school do not have good outcomes. The negative effects of the loss of connection with the school -including the social relationships that are part of schooling -are also documented in the literature (Asadi-Pooya et al., 2021). Once again, the health care team may need to state explicitly, in writing, that distance learning is medically contraindicated for the young person. ...
... For older youth the goal may be for them to return to work or to their higher-education programs. More broadly, consolidating the connection to the school or work environment, along with eliminating or managing any barriers that can disrupt this connection, is important because these social aspects of life are central determinants of health and quality of life across the lifespan (Asadi-Pooya et al., 2021). ...
This treatment manual stems from a program developed by the mind-body team at The Children’s Hospital at Westmead, a tertiary care paediatric hospital in New South Wales, Australia. The team’s Mind-Body Program, organised as part of a consultation-liaison psychiatry service within the Department of Psychological Medicine, works with young people who present with functional somatic symptoms, including functional seizures.
This manual describes treatment interventions for functional seizures developed over the last 20 years through clinical trial and error, by translating research findings into clinical practice, and by evaluating treatment interventions through prospective cohort studies. It provides general guidelines, methods, and insights for clinicians as they approach the care of each individual patient. The goal of treatment is for young people to return to good health and to normal functioning and wellbeing.
... A smaller proportion of children have a relapsing pattern of illness but are generally well. An even smaller proportion of children go on to have ongoing mental health concerns, chronic FND, or both [22,24]. ...
... The key problem worldwide is that FND-and other functional somatic symptomshave not been seen as an area of service priority and that adequate, evidence-based services have not been established. The expansion of services is of the highest priority because of the enormous long-term costs-in relation to health-care expenditures, socioeconomic consequences, and human impact on patients, families, and other caregivers-of poorly treated FND, which is then more likely to become chronic [24,25]. ...
Functional neurological (conversion) disorders (FNDs) in children are neuropsychiatric disorders involving complex interactions between the brain, mind, body, and context—the lived experience of the child and the family. The last two decades have seen important advances in our understanding, diagnosis, assessment, and treatment of FNDs in children. Of note, in this context, is the emergence of new research technologies, a resurgence of research interest in FNDs, a growing understanding of the biological embedding of stress and of the role of psychological processes in sensory and motor functions, new therapeutic approaches, and efforts to address and overcome past stigma. In this chapter, we highlight the key areas of knowledge, discuss the recent advances in the field, and set out current best practices. Throughout this chapter, we use the pronoun “she” because in the civilian pediatric setting, more girls than boys present with FNDs. During wartime or in the context of military action, the situation is reversed (Shephard B, A war of nerves: soldiers and psychiatrists in the twentieth century. Cambridge, MA: Harvard University Press; 2001).
... It comes as no surprise that youth with FND are at risk of school absenteeism, 4 which can be exacerbated by parent over-protection. 5 However, ongoing absenteeism has been empirically identified as a perpetuating factor in ongoing functional symptoms. 6 Thus, supporting consistent school engagement is a primary treatment target for youth with FND. 7 ...
Functional Neurological Disorder (FND) can significantly impact school functioning. Symptoms may affect children and adolescents academically, socially, psychologically, and impact school attendance. This article reviews the importance of being able to continue in school despite FND symptoms and recommendations to support this. It will provide a guideline for communication and collaboration with schools and describe the type of information that is helpful to share with school teams. This article will also discuss various accommodations that can be helpful in the school setting. Finally, other resources, such as IEPs and 504 Plans as well as additional sources of information and support are briefly reviewed.
... Similarly, school problems have been reported to be a common source of stress in children with FNSD. Common school-related difficulties include cognitive difficulties, learning problems, coping difficulties, high parental scholastic achievement expectations that are not in line with children's abilities, and school absenteeism [61,62]. Diagnosing and treating Table 3 Clinician and child percentage agreement and disagreement summary table (N = 62). ...
Youth with functional neurological symptom disorder (FNSD) often perceive themselves as having limited capabilities, which may not align with clinical evaluations. This study assessed the disparities between clinician evaluations and patient-reported outcome measures (PROMs) regarding pain, motor function, and learning difficulties in youth with FNSD. Sixty-two youths with FNSD participated in this study, all of whom reported experiencing pain, motor problems, and/or learning difficulties. Clinicians also assessed these domains, resulting in a two-by-two categorization matrix: (1) agreement: child and clinician report "problems"; (2) agreement: child and clinician report "no problems"; (3) disagreement: child reports "problems" while the clinician does not; and (4) disagreement: clinician reports "problems" while the child does not. Agreement/disagreement differences were analyzed. No significant differences in prevalence were observed between the evaluators regarding pain (clinician-85%, child-88%), motor (clinician-98%, child-95%), or learning problems (clinician-69%, child-61%). More than 80% of the children and clinicians report pain and motor disorders. Instances in which children and clinicians reported learning problems (40.3%) exceeded cases in which both reported no problems (9.6%) or only the child reported problems (20.9%). Overall, the agreement between pain and motor function assessments was high (>90%), whereas that concerning learning difficulties was moderate (49.9%). Disagreement in pain/motor assessments was minimal (<5%), whereas for learning difficulties, disagreement rates were high (>20%). In conclusion, a significant concordance exists between PROMs and clinician assessments of pain and motor problems. However, the higher frequency of disagreements regarding learning difficulties emphasizes the importance of incorporating patient and clinician evaluations in pediatric FNSD treatment.
... Consequently, integrative frameworks encompassing processes at multiple conceptual levels have evolved in relation to FDs, including biopsychosocial formulation [26], aberrant predictive processing [27,28], nosiplastic pain mechanisms [29], somatosensory amplification [30], and stress-diathesis models [31] representing prevailing explanatory approaches [26,31,32]. Interestingly, relevant factors in FD development and chronicity such as adverse life experiences [33], chronic stress [17], and stigma in healthcare settings [34] are also disproportionately experienced by SGM people [1][2][3]. ...
... 32 A lack of perceived family support is a risk factor for developing FND. 62 We speculated that lack of support from their fathers could have increased the risk for symptoms in patients 3 and 4. Patient 4 described the positive change in his relationship with his father as part of his overall improved quality of life. TGNC adults describe the strain of having to educate their families and others in their lives about TGNC experiences as a specific source of stress. ...
Youth who identify as transgender and gender nonconforming (TGNC) are at increased risk of anxiety, depression, bullying, and loss of social and family support. These factors may increase the risk of developing functional neurologic disorder (FND). If the risk of FND is increased in TGNC youth, then identifying which youth are at increased risk, and the particular times when risk is increased, may allow for earlier diagnosis and treatment of FND. Better awareness of functional symptoms among clinicians who care for TGNC youth may prevent disruption of gender-affirming care if FND symptoms emerge. Patients diagnosed with FND who are TGNC may require different forms of intervention than other youth with FND. We present 4 cases from our multidisciplinary pediatric FND program of TGNC youth who developed FND. In all individuals for whom follow-up information was available, access to gender-affirming health care was associated with marked improvement or resolution of FND symptoms.
... Given the findings from this study that caregivers of persons with epilepsy experience physical, social, psychological, and economic burdens in attempts to deliver care to their loved ones, in clinical practice for people with epilepsy, special attention needs to be targeted at caregivers of persons with epilepsy in regards to their holistic health. The approach to be used is the bio-psychosocial-economic model [53,54]. So, attention is paid not only to biological or physical health but also to psychological, social, and economic health through a comprehensive assessment, treatment, and counseling in the form of psychoeducation, and the formation of caregiver support groups to buffer them from feelings of burden. ...
Introduction
Epilepsy has been found to affect caregivers’ quality of life, lifestyle, psychological health, social well-being, and working time. Caregivers in Uganda as in the rest of the world are important in assisting a person with epilepsy in complying with medical directions and are actively involved in communicating with healthcare professionals. Little is known about the lived experiences of caregivers of persons afflicted with epilepsy in Uganda. The purpose of this study was to determine the lived experiences of caregivers of persons with epilepsy attending the epilepsy clinic at Mbale regional referral hospital, eastern Uganda.
Methods and materials
The caregivers’ lived experiences were elicited directly from them and their health workers who work with them in the care of the patients. Forty participants which consisted of 30 caregivers and 10 key informant health workers were selected for the study through purposive sampling. Face-to-face in-depth interviews with an unstructured interview guide were conducted to gather participants’ information. The principal investigator conceptualized the interview guide, the guide was then reviewed by co-investigators, and revised and approved as the final data collection instrument after an extensive and comprehensive literature review. The interview guide comprised two sections; the first section comprised the questions that elicited the participants’ social-demographic information. The second section comprised questions that explored caregivers’ experiences of persons afflicted with epilepsy. Notations were taken and a digital recorder was used purposely for audio recordings. All interviews lasted for an hour and were audio-recorded with the participant’s consent. An inductive thematic analysis was employed and adopted to identify the patterns emerging from the texts.
Results
The caregivers majorly perceived epilepsy as a burden. Four main themes were revealed from the analysis and these are: psychological burdens which included, worries about the future of the patient, being looked down upon; social burdens which entailed, affected public relations, feelings of stigma; an economic burden which included interference with the source of income, affected productivity at work; and physical burdens which included, Feelings of uneasiness and disrupted sleep among others.
Conclusion
The caregivers majorly perceived epilepsy as a serious burden. This burden can be psychological, social, economic, and physical. Therefore, services and plans targeting patients with epilepsy need to consider the burden that caregivers encounter to comprehensively manage epilepsy.
... Consequently, integrative frameworks encompassing processes at multiple conceptual levels have evolved in relation to FDs, including biopsychosocial formulation [26], aberrant predictive processing [27,28], nosiplastic pain mechanisms [29], somatosensory amplification [30], and stress-diathesis models [31] representing prevailing explanatory approaches [26,31,32]. Interestingly, relevant factors in FD development and chronicity such as adverse life experiences [33], chronic stress [17], and stigma in healthcare settings [34] are also disproportionately experienced by SGM people [1][2][3]. ...
... This is due in part to their complexity, difficulties establishing a diagnosis [2], and the debilitating and wide-ranging effects that the condition can have on both physical and mental health. There are various documented social consequences for people with FS [3] along with documented educational difficulties [4] and an elevated mortality rate [5]. ...
Intensive Short-Term Psychodynamic Therapy (ISTDP) has demonstrated promising evidence for the treatment of Functional Neurological Disorders (FND) including functional seizures. This paper aimed to further examine the therapeutic effects of a 3-session course of this treatment focusing on its potential to maintain reduced healthcare utility within a group of patients with complex difficulties, across an extended time period, post-therapy. The original study followed a mixed methods case series design and recruited 18 patients from secondary adult mental health care and specialist neurology services. Seventeen participants completed the intervention and attendance rates were very high (95%). In this follow-up study, which was solely focused on the utilization of healthcare resources, results showed decreases when comparing 12 months prior and 12 months post three sessions of ISTDP. The results provide further support for the use of ISTDP in this group of participants with complex clinical presentations, specifically, its capacity to reduce healthcare usage over 12 months post-therapy. Further evidence from controlled and randomized studies with larger sample sizes is warranted.
... NES has been shown to affect many social aspects of life and thus quality of life. Treatment should address the social determinants of health, including a patient's interactions with the community through relationships and employment (11). Our unique interdisciplinary NES clinic model has its basis in group therapy and was created with the intention of helping patients engage in appropriate and effective treatment that is cost-effective, increases accessibility, and builds shared experience among patients. ...
Objective:
Multifamily group (MFG) psychotherapy is widely used for mental and general medical conditions. MFG therapy engages family members in caring for a loved one experiencing illness and helps clarify the impact of illness on family. Use of MFG therapy for patients with nonepileptic seizures (NES) and their families to explore satisfaction with treatment and family functioning is described.
Methods:
MFG therapy for patients with NES and their participating family members was incorporated into an existing interdisciplinary group-based psychotherapy treatment program. The Family Assessment Device and a novel feedback questionnaire were used to understand the effect of MFG therapy on this population.
Results:
Patients with NES (N=29) and their corresponding family members (N=29) indicated on the feedback questionnaire their satisfaction with having MFG therapy as part of their treatment; satisfaction was also evidenced by a 79% (N=49 of 62) patient participation rate. Patients and family members reported enhanced understanding of the impact of illness on the family and believed MFG therapy would help them communicate about illness and reduce family conflict. Scores on the Family Assessment Device indicated that family members perceived better family functioning than did patients (average scores of 1.84 and 2.99, respectively).
Conclusions:
The discrepancy in perceived family functioning supports the idea of integrating family members in treatment for patients experiencing NES. The group treatment modality was satisfactory to participants and may prove useful for other kinds of somatic symptom disorders, which are often external manifestations of internal distress. Family members can become treatment allies in psychotherapy when included in treatment.
... In an international collaboration, I had the opportunity to work alongside eight other co-authors to review the relevance of a range of under-researched social aspects of life in patients with functional seizures [9]. This article covered relationship status, attachment styles, social behaviors, employment/school considerations, driving limitations, and stigma among other topics. ...
... Effective clinical interventions developed for patients and families living with ND must consider the multitude of factors contributing to patient and family stressors, such as child-specific disease trajectories, physical and mental health, social determinants of health and family trauma history [15,16]. Further, while patients and families with ND experience chronic, heightened levels of stress, they may also experience periods of adaptive coping when therapeutic support may not be needed [17,18]. ...
Background
Pediatric patients with neurological disorders often require lifelong management of symptoms and behaviours that can result in enduring emotional burden, stress and impacted health-related quality of life. Single session therapy (SST) draws upon patients’ existing skills and knowledge and has emerged as a therapeutic approach to address pediatric patient and family needs in a timely manner. This study aimed to assess the clinical effectiveness of SST for pediatric patients with neurological disorders and their families, considering self-efficacy, distress, anxiety, therapeutic alliance and client satisfaction, as well as perceptions of whether SST met their pressing needs.
Methods
A convergent parallel mixed-methods design included quantitative data collection via five standardized questionnaires across three time points and qualitative data collection through semi-structured interviews. Quantitative and qualitative data were analyzed independently and then integrated.
Results
The study comprised of 135 participants, including patients, parents and siblings across diverse neurological conditions. Scores of self-efficacy and anxiety in children, and distress and anxiety in adults, improved significantly after the SST. Notably, changes in anxiety in adults remained significant five to seven weeks after the SST. Seventeen participants participated in 12 semi-structured interviews. Participants described that SST (1) was a missing piece in ongoing clinical care, (2) illuminated existing strengths and resilience, and (3) effected a lasting impact beyond the single session.
Conclusions
SST may be a promising initial, strengths-based treatment to support the short-term and potentially long-term needs of pediatric patients with neurological disorders and their families by emphasizing existing strengths, supporting therapeutic alliance and cultivating hope.
... The effects of epilepsy have an impact on many aspects of a person's life, physical and mental health, educational attainment, career prospects, family, and relationships in general. Multidimensionality QOL refers to the coverage of a broad range of content, including physical, functional, emotional, and social well-bein 4 . The quality of life of epileptic patients, however, depends on family, socialites, and even on education, which reveals an interaction between the disease and its aspects 5 . ...
... 159,203 Thus, insecure attachment is evidence of the inefficient allostatic model a person has been running to regulate their body's budget with others. While not always present, insecure attachment is commonly identified in paediatric and adult populations with FND 204,205 ; in this population, insecure attachment has also been linked to increased symptom severity, childhood maltreatment and poor clinical outcomes. 206 Exploring potential reinterpretations of select FND findings using the theory of constructed emotion While a retrospective reinterpretation of published findings in the field is fraught with potential biases, this next section revisits select results to illustrate the use of the theory of constructed emotion in providing an alternative viewpoint on the neurobiological understanding of FND. ...
Functional neurological disorder (FND) reflects impairments in brain networks leading to distressing motor, sensory, and/or cognitive symptoms that demonstrate positive clinical signs on examination incongruent with other conditions. A central issue in historical and contemporary formulations of FND has been the mechanistic and etiological role of emotions. However, the debate has mostly omitted fundamental questions about the nature of emotions in the first place. In this perspective article, we first outline a set of relevant working principles of the brain (e.g., allostasis, predictive processing, interoception, and affect), followed by a focused review of the theory of constructed emotion to introduce a new understanding of what emotions are. Building on this theoretical framework, we formulate how altered emotion category construction can be an integral component of the pathophysiology of FND and related functional somatic symptoms. In doing so, we address several themes for the FND field including: 1) how energy regulation and the process of emotion category construction relate to symptom generation, including revisiting alexithymia, “panic attack without panic”, dissociation, insecure attachment, and the influential role of life experiences; 2) re-interpret select neurobiological research findings in FND cohorts through the lens of the theory of constructed emotion to illustrate its potential mechanistic relevance; and 3) discuss therapeutic implications. While we continue to support that FND is mechanistically and etiologically heterogenous, consideration of how the theory of constructed emotion relates to the generation and maintenance of functional neurological and functional somatic symptoms offers an integrated viewpoint that cuts across neurology, psychiatry, psychology, and cognitive-affective neuroscience.
... In about 60% of the cases, the cause is unknown (idiopathic) (Doyle et al., 2021;Stafstrom & Carmant, 2015). Epilepsy can have adverse effects on social and psychological wellbeing (Asadi-Pooya et al., 2021;Seo et al., 2015). ...
This study aimed to evaluate the potential neuroprotective effects of ketogenic diet (KD) against the neuronal disruptions induced by SE in lithium‐pilocarpine rat model of status epilepticus (SE). Four groups of female rats include; groups I and III received standard diet and groups II and IV received KD for 3 weeks. Groups I and II were left untreated, while groups III and IV were injected with LiCl (127 mg/kg, i.p.) followed by pilocarpine HCl (10 mg/kg, i.p.) 18–24 h later, repeatedly, till induction of SE. 72 h post‐SE, KD effectively ameliorated the balance between excitatory (glutamate) and inhibitory (GABA) neurotransmitters and the oxidative stress indices, increased adenine nucleotides and decreased immunoreactivity of iNOS, TNFα, glial fibrillary acidic protein, and synaptophysin. Thiswas in association with improvement in inflammatory response and neuronal tissue characteristics in hippocampus of SE rats. Histological changes showed preservation of neuronal integrity. These findings highlight the protective effects of KD in the acute phase post‐SE via ameliorating biochemical and histological changes involved.
Practical applications
Epilepsy is the fourth most common neurological disorder that requires lifelong treatment. It stigmatizes patients and their families. The use of the ketogenic diet (KD) as a therapy for epilepsy developed from observations that fasting could reduce seizures. From 1920s, the KD was a common epilepsy treatment until it was gradually superseded by anticonvulsant drugs so that by the 1980s it was rarely used. However, there has been a resurgence of interest and usage of the KD for epilepsy since the turn of the century. Despite its long history, the mechanisms by which KD exhibits its anti‐seizure action are not fully understood. Our study aims to identify the mechanism of KD which may help further studies to achieve the same benefits with a drug or supplement to overcome its unpalatability and gastrointestinal side effects.
... 7 In addition, social factors, like family network and community support, are important determinants of health that have a profound impact in disease outcome across specialties. 8,9 The biopsychosocial model places the patient at the center of a Venn diagram that includes relevant biological, psychological, and social factors. In this perspective article, we aim to increase cross-talk between the clinical neurosciences by detailing how a patient-centered, biopsychosocial formulation can serve as a guide for precision medicine in neurology. ...
The biopsychosocial model was defined by George L. Engel to propose a holistic approach to patient care. Through this model, physicians can understand patients in their context to aid the development of tailored, individualized treatment plans that consider relevant biological, psychological, and social-cultural-spiritual factors impacting health and longitudinal care. In this article, we advocate for the use of the biopsychosocial model in neurology practice across outpatient and inpatient clinical settings. To do so, we first present the history of the biopsychosocial model, and its relationships to precision medicine and deep phenotyping. Then, we bring the neurologist up-to-date information on the components of the biopsychosocial clinical formulation, including predisposing, precipitating, perpetuating, and protective factors. We conclude by detailing illustrative neurological case examples using the biopsychosocial model, emphasizing the importance of considering relevant psychological and social factors to aid the delivery of patient-centered clinical care in neurology.
Objective
Functional seizures (FS) are a highly debilitating symptom of functional neurological disorder (FND). FS requires a multi-disciplinary approach to treatment because the patient’s initial presentation is to neurology, emergency medicine, or primary care and treatment consists of psychotherapy. People with FS commonly experience severe childhood trauma, particularly sexual trauma. The authors aimed to investigate associations between reported trauma and maladaptive coping mechanisms in the FS population.
Methods
This retrospective, observational study reports on 137 patients enrolled in the FS Clinic at the University of Colorado between March 2020 - March 2021. Multiple linear regression was used to reveal associations between self-reported childhood sexual and violent trauma and maladaptive coping mechanisms of self-blame and disengagement on the Brief COPE. A quantile regression was generated for each of these outcomes.
Results
Results showed that violent and sexual trauma were experienced by 47.5% and 61.6% of the population sample, respectively. Of those exposed to violent trauma, 27.2% perceived it as extremely severe while 43.4% of those exposed to sexual trauma perceived it as extremely severe. Quantile regressions for self-blame and disengagement showed significance for the 25 th percentile of those who experienced violent trauma. Self-blame was significantly associated with the 50 th and 75 th percentile of those exposed to sexual trauma.
Conclusions
This evidence supports the value of identifying trauma experienced by individuals with FS as it is associated with specific coping mechanisms that may affect treatment. Identifying prior trauma and resulting coping mechanisms can potentially assist in individualizing care for people with FS.
Objectives
In vivo magnetic resonance spectroscopy (MRS) was used to investigate neurometabolic homeostasis in children with functional neurological disorder (FND) in three regions of interest: supplementary motor area (SMA), anterior default mode network (aDMN), and posterior default mode network (dDMN). Metabolites assessed included N-acetyl aspartate (NAA), a marker of neuron function; myo-inositol (mI), a glial-cell marker; choline (Cho), a membrane marker; glutamate plus glutamine (Glx), a marker of excitatory neurotransmission; γ-aminobutyric acid (GABA), a marker of inhibitor neurotransmission; and creatine (Cr), an energy marker. The relationship between excitatory (glutamate and glutamine) and inhibitory (GABA) neurotransmitter (E/I) balance was also examined.
Methods
MRS data were acquired for 32 children with mixed FND (25 girls, 7 boys, aged 10.00 to 16.08 years) and 41 healthy controls of similar age using both short echo point-resolved spectroscopy (PRESS) and Mescher-Garwood point-resolved spectroscopy (MEGAPRESS) sequences in the three regions of interest.
Results
In the SMA, children with FND had lower NAA/Cr, mI/Cr (trend level), and GABA/Cr ratios. In the aDMN, no group differences in metabolite ratios were found. In the pDMN, children with FND had lower NAA/Cr and mI/Cr (trend level) ratios. While no group differences in E/I balance were found (FND vs. controls), E/I balance in the aDMN was lower in children with functional seizures—a subgroup within the FND group. Pearson correlations found that increased arousal (indexed by higher heart rate) was associated with lower mI/Cr in the SMA and pDMN.
Conclusions
Our findings of multiple differences in neurometabolites in children with FND suggest dysfunction on multiple levels of the biological system: the neuron (lower NAA), the glial cell (lower mI), and inhibitory neurotransmission (lower GABA), as well as dysfunction in energy regulation in the subgroup with functional seizures.
Learning objectives:
• Develop and implement treatment plans for children and adolescents with functional neurological disorder (FND)• Outline a plan to increase awareness and standardize the care for patients with FND using evidence-based interventions.
Abstract:
Functional neurological disorder (FND) in children and adolescents involves the biological embedding of lived experience in the body and brain. This embedding culminates in stress-system activation or dysregulation and in aberrant changes in neural network function. In pediatric neurology clinics, FND represents up to one-fifth of patients. Current research shows good outcomes with prompt diagnosis and treatment using a biopsychosocial, stepped-care approach. At present, however-and worldwide-FND services are scarce, the result of long-standing stigma and ingrained belief that patients with FND do not suffer from a real ("organic") disorder and that they therefore do not require, or even deserve, treatment. Since 1994, the Mind-Body Program for children and adolescents with FND at The Children's Hospital at Westmead in Sydney, Australia-run by a consultation-liaison team-has delivered inpatient care to hundreds of patients with FND and outpatient care to hundreds of others. For less-disabled patients, the program enables community-based clinicians to implement biopsychosocial interventions locally by providing a positive diagnosis (by a neurologist or pediatrician), a biopsychosocial assessment and formulation (by clinicians from the consultation-liaison team), a physical therapy assessment, and clinical support (from the consultation-liaison team and the physiotherapist). In this Perspective we describe the elements of a biopsychosocial mind-body program intervention capable of providing, as needed, effective treatment to children and adolescents with FND. Our aim is to communicate to clinicians and institutions around the world what is needed to establish effective community treatment programs, as well as hospital inpatient and outpatient interventions, in their own health care settings.
Aim: Psychogenic nonepileptic seizures (PNES) or functional seizures are universal phenomena. However, data on their epidemiology is limited. The aim of the current study was to review the literature on the epidemiology of PNES and to provide analytical estimates of its incidence and prevalence based on the direct data that are available from previous studies on PNES.
Methods: The methods of this work had two parts: 1) MEDLINE, PsycINFO, and Scopus from inception to October 19, 2019 were systematically searched. 2) The analytical study of the incidence and prevalence of PNES was performed, based on the following data from previous studies: incidence of PNES, duration of PNES before making a diagnosis, outcome and mortality of PNES.
Results: The search strategy yielded five articles; three were on the incidence and two on the prevalence. In the analytical part of the study, the incidence of PNES was calculated to be 3.1 (95% Confidence Interval: 1.1 to 5.1) per 100,000 population per year. The calculated prevalence rate of PNES in 2019 was 108.5 (95% Confidence Interval: 39.2 to 177.8) per 100,000 population, in the USA.
Conclusion: While, the generalizability of these calculated incidence and prevalence rates to other places in the world is limited, they give us a reasonable hint that PNES is a common condition and the prevalence is much more than that it was thought before.
Objective
We investigated the marital status (married vs. none) among patients with seizures [i.e., epilepsy or functional seizures (FS)].
Methods
This was a retrospective study of an electronic database of patients with seizures. All young adult patients, 18 to 45 years of age, with a diagnosis of either epilepsy or FS were studied at the outpatient epilepsy clinic at Shiraz University of Medical Sciences, Shiraz, Iran, from 2008 until 2020. The two groups were matched for their age at diagnosis. Age at onset, sex, the marital status, and the final diagnosis were registered routinely.
Results
During the study period, 194 patients with FS and 455 patients with epilepsy fulfilled the inclusion criteria. The rates of the married status were not significantly different between the two groups; 101 patients with FS (52%) and 204 PWE (45%) were married (p = 0.103). In the general population in Iran, 42,399,792 out of 66,421,989 (64%) of all people older than 16 years of age were married. This rate is significantly higher than the rate of the married status among patients with FS (p = 0.0006) and also those with epilepsy (p = 0.00001).
Conclusion
While the rates of the married status were not significantly different between PWE and those with FS, these rates were significantly lower than that in the general population in Iran. There are intriguing cross-cultural similarities and differences between our observations and those from other nations. These should be investigated in large multicenter international studies in the future.
Objectives
Psychogenic non-epileptic seizures (PNES) have been hypothesized to emerge in the context of neural networks instability. To explore this hypothesis in children, we applied a graph theory approach to examine connectivity in neural networks in the resting-state EEG in 35 children with PNES, 31 children with other functional neurological symptoms (but no PNES), and 75 healthy controls.Methods
The networks were extracted from Laplacian-transformed time series by a coherence connectivity estimation method.ResultsChildren with PNES (vs. controls) showed widespread changes in network metrics: increased global efficiency (gamma and beta bands), increased local efficiency (gamma band), and increased modularity (gamma and alpha bands). Compared to controls, they also had higher levels of autonomic arousal (e.g., lower heart variability); more anxiety, depression, and stress on the Depression Anxiety and Stress Scales; and more adverse childhood experiences on the Early Life Stress Questionnaire. Increases in network metrics correlated with arousal. Children with other functional neurological symptoms (but no PNES) showed scattered and less pronounced changes in network metrics.Conclusion
The results indicate that children with PNES present with increased activation of neural networks coupled with increased physiological arousal. While this shift in functional organization may confer a short-term adaptive advantage—one that facilitates neural communication and the child’s capacity to respond self-protectively in the face of stressful life events—it may also have a significant biological cost. It may predispose the child’s neural networks to periods of instability—presenting clinically as PNES—when the neural networks are faced with perturbations in energy flow or with additional demands.
Background
People with functional neurological disorder (FND) are commonly seen by occupational therapists; however, there are limited descriptions in the literature about the type of interventions that are likely to be helpful. This document aims to address this issue by providing consensus recommendations for occupational therapy assessment and intervention.
Methods
The recommendations were developed in four stages. Stage 1: an invitation was sent to occupational therapists with expertise in FND in different countries to complete two surveys exploring their opinions regarding best practice for assessment and interventions for FND. Stage 2: a face-to-face meeting of multidisciplinary clinical experts in FND discussed and debated the data from stage 1, aiming to achieve consensus on each issue. Stage 3: recommendations based on the meeting were drafted. Stage 4: successive drafts of recommendations were circulated among the multidisciplinary group until consensus was achieved.
Results
We recommend that occupational therapy treatment for FND is based on a biopsychosocial aetiological framework. Education, rehabilitation within functional activity and the use of taught self-management strategies are central to occupational therapy intervention for FND. Several aspects of occupational therapy for FND are distinct from therapy for other neurological conditions. Examples to illustrate the recommendations are included within this document.
Conclusions
Occupational therapists have an integral role in the multidisciplinary management of people with FND. This document forms a starting point for research aiming to develop evidence-based occupational therapy interventions for people with FND.
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.
Functional neurological (conversion) disorder (FND) is a neuropsychiatric condition whereby individuals present with sensorimotor symptoms incompatible with other neurological disorders. Early-life maltreatment (ELM) is a risk factor for developing FND, yet few studies have investigated brain network–trauma relationships in this population. In this neuroimaging–gene expression study, we used two graph theory approaches to elucidate ELM subtype effects on resting-state functional connectivity architecture in 30 patients with motor FND. Twenty-one individuals with comparable depression, anxiety, and ELM scores were used as psychiatric controls. Thereafter, we compared trauma endophenotypes in FND with regional differences in transcriptional gene expression as measured by the Allen Human Brain Atlas (AHBA). In FND patients only, we found that early-life physical abuse severity, and to a lesser extent physical neglect, correlated with corticolimbic weighted-degree functional connectivity. Connectivity profiles influenced by physical abuse occurred in limbic (amygdalar–hippocampal), paralimbic (cingulo-insular and ventromedial prefrontal), and cognitive control (ventrolateral prefrontal) areas, as well as in sensorimotor and visual cortices. These findings held adjusting for individual differences in depression/anxiety, PTSD, and motor phenotypes. In FND, physical abuse also correlated with amygdala and insula coupling to motor cortices. In exploratory analyses, physical abuse correlated connectivity maps overlapped with the AHBA spatial expression of three gene clusters: (i) neuronal morphogenesis and synaptic transmission genes in limbic/paralimbic areas; (ii) locomotory behavior and neuronal generation genes in left-lateralized structures; and (iii) nervous system development and cell motility genes in right-lateralized structures. These circuit-specific architectural profiles related to individual differences in childhood physical abuse burden advance our understanding of the pathophysiology of FND.
Objective
We aimed to characterize the demographics of adults with dissociative (nonepileptic) seizures, placing emphasis on distribution of age at onset, male:female ratio, levels of deprivation, and dissociative seizure semiology.
Methods
We collected demographic and clinical data from 698 adults with dissociative seizures recruited to the screening phase of the CODES (Cognitive Behavioural Therapy vs Standardised Medical Care for Adults With Dissociative Non‐Epileptic Seizures) trial from 27 neurology/specialist epilepsy clinics in the UK. We described the cohort in terms of age, age at onset of dissociative seizures, duration of seizure disorder, level of socioeconomic deprivation, and other social and clinical demographic characteristics and their associations.
Results
In what is, to date, the largest study of adults with dissociative seizures, the overall modal age at dissociative seizure onset was 19 years; median age at onset was 28 years. Although 74% of the sample was female, importantly the male:female ratio varied with age at onset, with 77% of female but only 59% of male participants developing dissociative seizures by the age of 40 years. The frequency of self‐reported previous epilepsy was 27%; nearly half of these epilepsy diagnoses were retrospectively considered erroneous by clinicians. Patients with predominantly hyperkinetic dissociative seizures had a shorter disorder duration prior to diagnosis in this study than patients with hypokinetic seizures (P < .001); dissociative seizure type was not associated with gender. Predominantly hyperkinetic seizures were most commonly seen in patients with symptom onset in their late teens. Thirty percent of the sample reported taking antiepileptic drugs; this was more common in men. More than 50% of the sample lived in areas characterized by the highest levels of deprivation, and more than two‐thirds were unemployed.
Significance
Females with dissociative seizures were more common at all ages, whereas the proportion of males increased with age at onset. This disorder was associated with socioeconomic deprivation. Those with hypokinetic dissociative seizures may be at risk for delayed diagnosis and treatment.
Objectives
To establish the incidence and long-term outcomes (up to 21 years) of children presenting to a University hospital paediatric neurology service with symptoms due to functional neurological disorder (FND) with particular reference to occurrence of FND or similar symptoms in adulthood.
Methods
Retrospective chart review to determine characteristics of the original paediatric FND presentation plus record-linkage with providers of Child and Adolescent Mental Health Services. Chart review of adult medical records for documentation of functional symptoms in adulthood.
Results
124 individuals (56% female) met entry criteria. The most common presentations were seizures (18%), sensory loss (18%) and motor symptoms (16%). Frequency gradually increased with age of onset with an incidence in paediatric neurological services of 6 per 100 000 children under 16. In up to 21 years’ follow-up (median 8.3 years), 114/124 attained their 16th birthdays by the study census date and were thus eligible for inclusion in an analysis of symptom persistence/recurrence in adulthood. 26/114 (23%) showed evidence of FND in adulthood of sufficient significance to be recorded in medical records.
Conclusion
Paediatric FND is commoner than previous estimates. Even in this selected population of children reaching specialist paediatric neurology services, a high long-term remission rate is observed.
Objective:
In this cross-sectional study, childhood traumas, attachment security and alexithymia in adolescents with psychogenic nonepileptic seizures (PNES) were compared with those of adolescents without any psychiatric disorder using both semi-structured clinical interviews and self-report scales.
Method:
This study included 42 adolescents with PNES aged between 12-18 and 38 healthy adolescents who were matched with the study group in respect to socio-demographic variables. All adolescents and their parents were interviewed using Schedule for Affective Disorders and Schizophrenia for School-Age Children-Present and Lifetime Version in order to evaluate psychiatric disorders. Clinician- Administered Posttraumatic Stress Disorder (PTSD) Scale for Children and Adolescents was used to examine the presence of PTSD symptoms. All adolescents completed the Childhood Trauma Questionnaire-28, Short Form of Inventory of Parent and Peer Attachment, Toronto Alexithymia Scale and Rosenberg Self Esteem Scale.
Results:
Adolescents with PNES had more emotional and sexual traumatic experiences and PTSD symptoms compared to the control group. PNES group perceived higher "communication" but lower "trust" in attachment relationships with their mothers and fathers. Higher alexithymia and lower self-esteem were determined in the PNES group. Childhood traumas, lifetime PTSD symptoms and alexithymia were found to be significant risk factors for PNES in adolescents.
Conclusion:
Results indicate that comorbid psychiatric disorders, traumatic experiences, attachment problems and alexithymia need to be evaluated and treated in adolescents with PNES.
Objective
Certification by treating physicians of fitness to drive in people with epilepsy creates a conflict of interest that may result in unsafe decisions, damage the doctor‐patient relationship, expose the physician to legal liability and prevent optimal treatment. Ideally, the treating physician should provide objective clinical information to the driver licensing authority (DLA), which then determines fitness or otherwise. However, DLAs in Australia do not employ medical staff and the national standards are complex. Fitness is determined by the treating physician, according to published national standards. The purpose of this study was to determine the feasibility of using a decision tree to determine fitness, according to the Australian standards.
Methods
A decision tree was constructed to use clinical data to determine whether a patient met the national standard to drive a private motorcar, failed to meet it or required further assessment. A form was designed to collect the necessary clinical data from the treating physician. A computerized version of the decision tree was then used in a pilot in two Australian states in parallel with the existing certification system. Four hundred thirty‐nine drivers with declared epilepsy and their treating physicians were invited to participate when their annual driver licence review was due.
Results
Two hundred fifty‐three (58%) forms were returned. All patients were considered fit to drive by their physician. Seventy‐six percent had not had a seizure for over two years. In 88.1%, there was agreement between the decision tree and treating physician, with 3.6% identified by the decision tree as requiring review. Although considered fit by their physician, 6.3% did not meet the national standard to drive.
Significance
The decision tree model is a practical alternative to fitness certification by treating physicians. This Australian pilot can serve as a model for applying objective standards to driving assessments in other jurisdictions, using local driving standards. It has the potential to improve road safety by avoiding the negative effects of certification by treating physicians and can cope with complex standards. It is now in use in two states of Australia.
Background
Seizure disorders affect not only the individual living with seizures, but also those caring for them. Carer–patient relationships may be influenced by, and have an influence on, some aspects of living with seizure disorders — with potentially different interactions seen in epilepsy and psychogenic nonepileptic seizures (PNES).
Objectives
We studied the influence of patient and carer attachment style and relationship quality on carer wellbeing and psychological distress, and explored whether these associations differ between carers for people with epilepsy and for those with PNES.
Methods
Consecutive adult patients with epilepsy (N = 66) and PNES (N = 16) and their primary informal carers completed questionnaires about relationship quality, attachment style, and psychopathological symptom burden. We used correlation analysis to identify associations between relationship quality, attachment style, and carer depression, anxiety, and wellbeing; and to explore differences in these associations between carers for people with epilepsy and for those with PNES.
Results
Overall, 25.3% of carers for people with epilepsy or PNES had scores above the clinical cutoff for depression and 39.6% for anxiety; significantly more carers for people with PNES reported clinically significant depression (47.1% vs. 20.0%), but there was no difference in anxiety rates likely to be of clinical relevance. Correlations differed significantly between carers for people with epilepsy and for those with PNES in terms of patient quality of life and carer anxiety (rE = − 0.577, rPNES = − 0.025); seizure severity and carer depression (rE = 0.248, rPNES = − 0.333) and mental wellbeing (rE = − 0.356, rPNES = 0.264); patient depression and carer anxiety (rE = 0.387, rPNES = − 0.266); and patient anxious attachment and carer anxiety (rE = 0.382, rPNES = 0.155).
Significance
Clinically evident levels of psychological distress are prevalent among carers for people with epilepsy and PNES. Clinical and relationship variables affect carer quality of life differently depending on whether care is provided for individuals with epilepsy or PNES.
Background
Conflicting results have been reported regarding employment status and work ability in adults with congenital heart disease (CHD). Since this is an important determinant for quality of life, we assessed this in a large international adult CHD cohort.
Methods
Data from 4028 adults with CHD (53% women) from 15 different countries were collected by a uniform survey in the cross‐sectional APPROACH International Study. Predictors for employment and work limitations were studied using general linear mixed models.
Results
Median age was 32 years (IQR 25‐42) and 94% of patients had at least a high school degree. Overall employment rate was 69%, but varied substantially among countries. Higher education (OR 1.99‐3.69) and having a partner (OR 1.72) were associated with more employment; female sex (OR 0.66, worse NYHA functional class (OR 0.67‐0.13), and a history of congestive heart failure (OR 0.74) were associated with less employment. Limitations at work were reported in 34% and were associated with female sex (OR 1.36), increasing age (OR 1.03 per year), more severe CHD (OR 1.31‐2.10), and a history of congestive heart failure (OR 1.57) or mental disorders (OR 2.26). Only a university degree was associated with fewer limitations at work (OR 0.62).
Conclusions
There are genuine differences in the impact of CHD on employment status in different countries. Although the majority of adult CHD patients are employed, limitations at work are common. Education appears to be the main predictor for successful employment and should therefore be encouraged in patients with CHD.
Purpose
People with non-epileptic seizures (NES) consistently report poorer Health-Related Quality of Life (HRQoL) than people with epilepsy. Yet, unlike in epilepsy, knowledge of how social factors influence the HRQoL of adults with NES is limited. To add to the evidence base, this study explores the relationship between HRQoL and perceived stigma among adults with NES, and the role of socio-demographic characteristics.
Methods
Data was gathered from a survey of 115 people living with the condition, recruited from online support groups. Participants provided socio-demographic and health-related data and completed a series of questions investigating their HRQoL (QOLIE-31) and stigma perceptions (10-item Epilepsy Stigma Scale).
Results
Participants were found to experience high levels of perceived stigma (median 5.2, mean 4.9). A significant and moderate inverse correlation was observed between HRQoL and stigma (rs − .474, p = < 0.001); suggesting higher perceptions of stigma contribute to poorer HRQoL among adults with NES. Stigma perceptions were found to be most strongly associated with the seizure worry (rs = − .479), emotional wellbeing (rs = − .421), and social functioning (rs = .407) HRQoL domains. Participants who reported being in employment or education were found to have significantly better HRQoL than those who were not (p = < 0.001).
Conclusion
More (qualitative and quantitative) research is justified to understand how − and why – those with the condition experience stigmatisation, and the factors that impede and help facilitate the participation of people with NES in education and employment.
Background: People with non-epileptic seizures (NES) describe challenging relationships with health professionals, and explain negative interactions as common and expected. Despite these difficulties, little is known about how people with NES experience difficult healthcare encounters.
Methods: Using a thematic discourse analysis approach, we analysed the free-text survey responses of 135 people with NES and asked: what kind of challenges do people living with this condition encounter when interacting with health professionals, and how do they experience the consequences of difficult interactions? We explore their experiences by interpreting the latent meaning of participants’ texts from a social-constructionist perspective on health and illness.
Results: The overarching narrative depicts a fundamental breakdown in patient-provider relationships. According to our data, the negative experiences of study participants emerge from more than practitioners’ lack of awareness of NES and access to information about the condition - to the extent that it is available. In examining the challenges people with NES encounter when interacting with health professionals, their main experiences centre on blame and humiliation. When exploring their experiences, theories of stigma serve as a useful theoretical framework.
Conclusions: Normative judgements arising from psychogenic understandings of NES are stigmatising and restrict professional displays of respectful (patient-centred) care. Those with the condition depict being negatively stereotyped, illegitimated and held morally culpable by health professionals. Perceived to lack medical, moral and credible status, participants describe practitioners who treat them with disrespect, and some recount conduct that defies all ethical and professional obligations and standards. These encounters can have wide-ranging adverse consequences for patients: emotionally, physically, and for their future healthcare. The quality of healthcare interactions for people with NES requires urgent improvements. In addition to increased awareness of the condition, practitioners need to be conscious of making and acting on adverse moral appraisals when interacting with this patient group.
Psychogenic non-epileptic seizures (PNES) are a nonspecific, umbrella category that is used to collect together a range of atypical neurophysiological responses to emotional distress, physiological stressors and danger. Because PNES mimic epileptic seizures, children and adolescents with PNES usually present to neurologists or to epilepsy monitoring units. After a comprehensive neurological evaluation and a diagnosis of PNES, the patient is referred to mental health services for treatment. This study documents the diagnostic formulations – the clinical formulations about the probable neurophysiological mechanisms – that were constructed for 60 consecutive children and adolescents with PNES who were referred to our Mind-Body Rehabilitation Programme for treatment. As a heuristic framework, we used a contemporary reworking of Janet’s dissociation model: PNES occur in the context of a destabilized neural system and reflect a release of prewired motor programmes following a functional failure in cognitive-emotional executive control circuitry. Using this framework, we clustered the 60 patients into six different subgroups: (1) dissociative PNES (23/60; 38%), (2) dissociative PNES triggered by hyperventilation (32/60; 53%), (3) innate defence responses presenting as PNES (6/60; 10%), (4) PNES triggered by vocal cord adduction (1/60; 2%), (5) PNES triggered by activation of the valsalva manoeuvre (1/60; 1.5%) and (6) PNES triggered by reflex activation of the vagus (2/60; 3%). As described in the companion article, these diagnostic formulations were used, in turn, both to inform the explanations of PNES that we gave to families and to design clinical interventions for helping the children and adolescents gain control of their PNES.
Psychogenic non-epileptic seizures (PNES) – time-limited disturbances of consciousness and motor-sensory control, not accompanied by ictal activity on electroencephalogram (EEG) – are best conceptualized as atypical neurophysiological responses to emotional distress, physiological stressors and danger. Patients and families find the diagnosis of PNES difficult to understand; the transition from neurology (where the diagnosis is made) to mental health services (to which patients are referred for treatment) can be a bumpy one. This study reports how diagnostic formulations constructed for 60 consecutive children and adolescents with PNES were used to inform both the explanations about PNES that were given to them and their families and the clinical interventions that were used to help patients gain control over PNES. Families were able to accept the diagnosis of PNES and engage in treatment when it was explained how emotional distress, illness and states of high arousal could activate atypical defence responses in the body and brain – with PNES being an unwanted by-product of this process. Patients and their families made good use of therapeutic interventions. A total of 75% of children/adolescents (45/60) regained normal function and attained full-time return to school. Global Assessment of Functioning scores increased from 41 to 67 (t(54) = 10.09; p < .001). Outcomes were less favourable in children/adolescents who presented with chronic PNES and in those with a chronic, comorbid mental health disorder that failed to resolve with treatment. The study highlights that prompt diagnosis, followed by prompt multidisciplinary assessment, engagement, and treatment, achieves improved outcomes in children/adolescents with PNES.
Background: People with non-epileptic seizures (NES) describe difficult and challenging relationships with health professionals, and explain negative interactions as common and expected. Despite these difficulties, little is known about how people with NES experience healthcare encounters.
Methods: Using a thematic discourse analysis approach, we analysed the free-text survey responses of 135 people with NES and asked: what kind of challenges do people living with this condition encounter when interacting with health professionals, and how do they experience the consequences of difficult interactions? We explore their experiences by interpreting the latent meaning of participants’ texts from a social-constructionist perspective on health and illness.
Results: The overarching narrative depicts a fundamental breakdown in patient-provider relationships. According to our data, the negative experiences of study participants emerge from more than practitioners’ lack of awareness of NES and access to information about the condition - to the extent that it is available. In examining the challenges people with NES encounter when interacting with health professionals, their main experiences centre on blame and humiliation. When exploring their experiences, theories of stigma serve as a useful theoretical framework.
Conclusions: Normative judgements arising from psychogenic understandings of NES are stigmatising and restrict professional displays of respectful (patient-centred) care.Those with the condition depict being negatively stereotyped, illegitimated and held morally culpable by health professionals. Perceived to lack medical, moral and credible status, participants describe practitioners who treat them with disrespect, and they recount conduct that defies ethical and professional obligations and standards. These encounters can have wide-ranging adverse consequences for patients: emotionally, physically, and for their future healthcare. The quality of healthcare interactions for people with NES requires urgent improvements. In addition to increased awareness of the condition, practitioners need to be conscious of making and acting on adverse moral appraisals when interacting with this patient group.
Psychogenic nonepileptic seizures (PNES) are classified as a mental disorder, the manifestations of which superficially resemble epileptic seizures.
There is a notable lack of in-depth qualitative or quantitative studies investigating the stigma attached to PNES. The current study is an exploratory analysis into the nature of perceived stigma in those with PNES when compared with individuals with epilepsy. Individuals with epilepsy (n = 78) and PNES (n = 47) were recruited from a United Kingdom hospital or membership-led organizations for individuals living with seizures. Participants were asked to complete a series of questionnaires investigating health-related quality-of-life components (NEWQOL-6D), anxiety (GAD-7), depression (NDDI-E), seizure frequency and severity (LSSS-3), and illness perception (B-IPQ). Perceived stigma was measured using one question taken from the NEWQOL-6D. Individuals with PNES reported a greater level of perceived stigma than those with epilepsy (p = 0.04). Our results indicate that the risk of experiencing perceived stigma in PNES was 42% higher than the risk in epilepsy. In epilepsy, but not PNES, perceived stigma was significantly associated with seizure frequency, anxiety, depression, and many of the sequelae of the condition. In both conditions, self-control was associated with stigma (rho ≥ 0.34, p ≤ 0.01). This study was exploratory, and so definitive conclusions cannot be made; however, our findings suggest that the majority (87.2%) of individuals with PNES reported experiencing some degree of perceived stigma, the risk of which is greater than that in epilepsy. Further research is needed into the prevalence, nature, and consequences of stigma in PNES.
Purpose
Qualitative studies examining lived experiences of psychogenic nonepileptic seizures (PNES) have predominantly relied on datasets collected using clinical or research interviews. This study pursued a different approach by investigating individuals’ written accounts of their condition.
Methods
Participants (n = 19) were recruited from membership-led organisations for individuals living with seizures and from a United Kingdom hospital. Participants were instructed to produce four pieces of writing: 1) about their thoughts and feelings about their condition; 2) a letter to their condition; 3) a letter to their younger self; and 4) about a personal value. All writings were analysed using thematic analysis.
Results
Six main-themes emerged from the data. Theme 1: ‘living with PNES’ demonstrated that all participants presented the condition as having a debilitating effect. Theme 2: ‘Emotions’ revealed that individuals were struggling with anxiety, low mood and self-worth. Theme 3: ‘Seizure symptoms’ showed variability was a prominent feature in the description of ictal events. Theme 4: ‘Treatment and outcomes’ demonstrated that individual’s perception of diagnosis and therapy differed greatly. Theme 5: ‘Causation and development’ revealed that the majority of participants spontaneously reported experiencing a traumatic event in the past. Theme 6: ‘Lack of understanding’ by themselves, the public and healthcare professionals appeared to pose considerable challenges to participants.
Conclusions
Qualitative research has an important role to play for improving our understanding of PNES. The findings contribute to the literature by highlighting the nature of stigma that people with PNES experience, and also their proneness to demonstrate problems with self-worth.
This chapter addresses common barriers to care delivery in psychogenic nonepileptic
seizures (PNES) and limitations of current approaches. Theoretical and practical
considerations in delivering PNES care are discussed. These include a stepped-care
approach, which offers a strategy for efficiently managing health care resources and has
promise in treatment of PNES. Patient-centered care, a general approach to providing health
care services in a manner that takes into consideration the patients’ expressed needs, desires,
and preferences, is also considered. Examples of care models are presented, including
a pediatric model for PNES recently developed and being tested in a Canadian hospital
setting. Future directions for the development of care models in PNES are discussed and a
list of recommendations is provided.
Objective
Functional neurological symptom disorder refers to the presence of neurological symptoms not explained by neurological disease. Although this disorder is presumed to reflect abnormal function of the brain, recent studies in adults show neuroanatomical abnormalities in brain structure. These structural brain abnormalities have been presumed to reflect long-term adaptations to the disorder, and it is unknown whether child and adolescent patients, with illness that is typically of shorter duration, show similar deficits or have normal brain structure.
Method
High-resolution, three-dimensional T1-weighted magnetic resonance images (MRIs) were acquired in 25 patients (aged 10–18 years) and 24 healthy controls. Structure was quantified in terms of grey matter volume using voxel-based morphometry. Post hoc, we examined whether regions of structural difference related to a measure of motor readiness to emotional signals and to clinical measures of illness duration, illness severity, and anxiety/depression.
Results
Patients showed greater volumes in the left supplementary motor area (SMA) and right superior temporal gyrus (STG) and dorsomedial prefrontal cortex (DMPFC) (corrected p < 0.05). Previous studies of adult patients have also reported alterations of the SMA. Greater SMA volumes correlated with faster reaction times in identifying emotions but not with clinical measures.
Conclusions
The SMA, STG, and DMPFC are known to be involved in the perception of emotion and the modulation of motor responses. These larger volumes may reflect the early expression of an experience-dependent plasticity process associated with increased vigilance to others' emotional states and enhanced motor readiness to organize self-protectively in the context of the long-standing relational stress that is characteristic of this disorder.
Stigma against patients with functional neurological disorder (FND) presents obstacles to diagnosis, treatment, and research. The lack of biomarkers and the potential for symptoms to be misunderstood, invalidated, or dismissed can leave patients, families, and healthcare professionals at a loss. Stigma exacerbates suffering and unmet needs of patients and families, and can result in poor clinical management and prolonged, repetitive use of healthcare resources. Our current understanding of stigma in FND comes from surveys documenting frustration experienced by providers and distressing healthcare interactions experienced by patients. However, little is known about the origins of FND stigma, its prevalence across different healthcare contexts, its impact on patient health outcomes, and optimal methods for reduction. In this paper, we set forth a research agenda directed at better understanding the prevalence and context of stigma, clarifying its impact on patients and providers, and promoting best practices for stigma reduction.
Purpose
To explore various social aspects of life (i.e., employment, education, and driving) in a large sample of patients with functional seizures (FS) living in seven countries from four continents.
Methods
In this retrospective study, we investigated adult patients with FS, who were admitted to the epilepsy monitoring units at centers in Iran, Qatar, USA, France, Georgia, Egypt, and United Arab Emirates (UAE). We studied the social aspects of life in the whole cohort. Then, we compared the social aspects of life between different world regions.
Results
Four hundred and forty patients were included (241 from Iran, 56 from Qatar, 52 from France, 41 from the USA, 19 from UAE, 18 from Egypt, and 13 from Georgia). One hundred and twenty six people (30%) had college education, 142 (33%) were employed, and 101 (28%) drove a motor vehicle in their routine daily lives. People with FS and college education were more likely to report a history of sexual abuse compared with those with a lower education. Patients with no loss of responsiveness with their FS were more likely to be employed. Male patients and patients without aura were more likely to drive a motor vehicle in their routine daily lives. None of the social characteristics of the patients with FS showed significant differences among the two large culturally different groups (Muslim nations vs. Christian nations).
Conclusion
It appears that patients with FS across cultures have significant problems in their social aspects of life.
Purpose:
The study aimed to investigate the marital status in a cohort of patients with functional seizures from seven countries in four continents. Factors associated with marital status were also explored.
Methods:
Adult patients with functional seizures who were admitted to the epilepsy monitoring units at centers in Iran, Qatar, USA, France, Georgia, Egypt, and United Arab Emirates (UAE) were retrospectively identified. Marital status was assessed in the whole cohort.
Results:
Four hundred thirty-two patients were included (241 from Iran, 52 from France, 48 from Qatar, 41 from the USA, 19 from UAE, 18 from Egypt, and 13 from Georgia); 302 were women and 130 were men. One hundred fifty (35%) subjects were single, 245 (57%) were married, and 37 (8%) were separated (31 divorced, 7%; 6 widowed, 1%). Auras with functional seizures were less frequently reported by single people in comparison with that by married patients (54% vs. 61%) [odds ratio (OR) = 0.58]. Separated people compared with those who were married less often had auras with their functional seizures (27% vs. 61%; OR = 0.26) and more often reported a history of sexual abuse (49% vs. 12%; OR = 6.14).
Conclusion:
The marital status has significant associations with the semiology of functional seizures. A history of sexual abuse is significantly associated with being separated and should be inquired and tackled appropriately during the management process of patients with functional seizures.
ABSTRACT
In this narrative review, we will discuss some of the significant risks and dramatic consequences that are associated with epilepsy: depression, suicide, seizure-related injuries, and mortality, both in adults and in children. Considering the high prevalence of depression among people with epilepsy (PWE), routine and periodic screening of all PWE for early detection and appropriate management of depres- sion is recommended. PWE should be screened for suicidal ideation regularly and when needed, patients should be referred for a psychiatric evaluation and treatment. When starting an antiepileptic drug (AED) or switching from one to another AED, patients should be advised to report to their treat- ing physician any change in their mood and existence of suicidal ideation. The risk of injuries for the general epilepsy population is increased only moderately. The risk is higher in selected populations attending epilepsy clinics and referral centers. This being said, there are PWE that may suffer frequent, severe, and sometimes even life-threatening seizure-related injuries. The most obvious way to reduce risk is to strive for improved seizure control. Finally, PWE have a 2–3 times higher mortality rate than the general population. Deaths in PWE may relate to the underlying cause of epilepsy, to seizures (including sudden unexpected death in epilepsy [SUDEP] and seizure related injuries) and to status epilepticus, as well as to other conditions that do not appear directly related to epilepsy. Improving seizure control and patient education may be the most important measures to reduce epilepsy related mortality in general and SUDEP in particular.
Objective
Caregiver burden in psychogenic non-epileptic seizures (PNES) is an important but understudied reality. The objective of this exploratory study was to quantify caregiver burden in PNES and to identify the patient and caregiver characteristics associated with it.
Methods
PNES patients and their identified caregivers completed surveys about demographic, disease related and psychosocial characteristics during their Epilepsy Monitoring Unit (EMU) admission. Associations were evaluated using the Zarit Caregiver Burden Inventory (ZCBI) score as an independent variable and the patient and caregiver related characteristics as dependent variables.
Results
43 patients and 28 caregivers were recruited. The patients were on average 36 years old, single women, unemployed, with some college education. They suffered from PNES on average for 8 years, having approximately 20 seizures per month, and were previously maintained on ≥ 2 antiseizure medications. Most caregivers were first degree relatives with a mean age of 43 years, married employed women of higher educational attainment, typically cohabitating with the patients. Caregiver burden was within the mild-moderate range (ZCBI mean score 28). The burden appeared higher in caregivers of male patients. Patient quality of life, depression and medication side effects were associated with that burden. Additionally, caregiver stigma, depression and anxiety emerged as potential contributors. In the multivariate analysis, patient quality of life and caregiver depression stood out as the most robust factors.
Conclusion
There is substantial caregiver burden in PNES. It is associated with both the patient and the caregiver psychosocial well-being in a reciprocal relationship.
Functional neurological (conversion) disorder (FND) is a neuropsychiatric condition characterized by sensorimotor symptoms exhibiting features incompatible with other neurologic diseases. Individuals with motor FND (mFND) typically present with limb weakness, nonepileptic seizures, and/or abnormal movements. However, this population also frequently reports clouded thinking, inattention, and memory difficulties. Cognitive complaints in individuals with mFND are important to evaluate as they may negatively impact quality of life and impede treatment engagement. We provide a narrative review of the neuropsychological testing literature detailing neurocognitive profiles of individuals with mFND. We also present three illustrative clinical cases at the intersection of mFND and cognitive concerns. Several studies and our case examples highlight that generally normal cognitive performance can be observed concurrently with subjective cognitive complaints in some individuals with mFND; this mismatch may be a possible "rule-in" sign of functional cognitive symptoms. Other studies have reported impairments in attention, memory, language, visuospatial, and executive functioning in individuals with mFND. These impairments could be related to medical-psychiatric comorbidities, psychotropic medication side effects, and intrinsic disease mechanisms. When evaluating individuals with mFND and their cognitive complaints, clinicians can use performance validity test and psychopathology findings to help them interpret the neuropsychological test results. Perceptual mismatches between intact objective cognitive performance and subjective cognitive complaints may reflect a negative attentional bias for cognitive abilities that can be targeted with cognitive retraining and cognitive behavioral therapy. Neuropsychological evaluations may provide a useful adjunctive tool clinicians can use to help assess individuals with mFND and cognitive concerns.
Purpose
We investigated the driving rate and the rate of road traffic accidents in patients with functional seizures. We hypothesized that road traffic accidents are common in these patients.
Methods
In this long-term study, all patients with functional seizures, who were diagnosed at Shiraz Comprehensive Epilepsy Center, Iran, from 2008 until 2018, were investigated. In a phone call interview in February 2020, we obtained the following information: seizure outcome, driving a motor vehicle, experiencing any road traffic accidents in the past 12 months, and their drug regimen.
Results
100 patients participated; 41 patients were driving a motor vehicle in their routine daily lives. Seizure freedom [Odds Ratio (OR): 6.15; 95% Confidence Interval (CI): 1.95-19.35; p = 0.002] and being employed (OR: 10.66; 95% CI: 3.03-37.49; p = 0.0001) were significantly associated with driving a motor vehicle. Five patients reported experiencing road traffic accidents while driving a motor vehicle in the past 12 months. All these five patients reported being seizure-free.
Conclusion
The majority of patients with functional seizures do not drive a motor vehicle; fear of seizures is a significant determinant. When patients with functional seizures achieve seizure freedom, the rate of driving a motor vehicle increases significantly. The rate of road traffic accidents in patients with functional seizures does not seem to be high.
Objectives
Opinions of healthcare professionals may shape their attitudes towards any given condition and patient population. The aim of the current study was to gather the views of healthcare providers on some of the issues on symptomatology and terminology of functional seizures (FS).
Methods
This was a questionnaire study that was sent to all neurologists and psychiatrists practicing in Fars province, Iran. The survey included six questions: one question about professional qualifications, one question on the participants' personal experience with the topic of interest (i.e., FS), and four questions probing their opinions about the matter of interest.
Results
Of the 81 physicians approached, 69 responded (response rate: 85%; 32 psychiatrists and 37 neurologists). Physicians held varying opinions on some of the key issues (e.g., terminology, semiology, and driving permission) in this patient population. Participants were almost evenly split on how to make an advice on driving permission in these patients. Most physicians endorsed “psychogenic nonepileptic seizures” to label this condition.
Conclusion
This study highlights some of the challenging issues surrounding FS. Investigators should explore the pathophysiology and nature of FS and whether these patients have any difficulties with driving and other important issues in their daily lives.
Purpose
We investigated the rate of driving in patients with psychogenic nonepileptic seizures (PNES) from a large cohort in Iran. We hypothesized that these patients commonly do not drive. We also investigated the potential factors that may be associated with driving in these patients.
Methods
In this retrospective study, all patients with PNES, who were diagnosed at Shiraz Comprehensive Epilepsy Center, Iran, from 2008 until 2019, were investigated. Age, gender, age at seizure onset, seizure semiology and characteristics, driving history reported by the patients, and video-electroencephalography recordings of all patients were registered routinely.
Results
During the study period, 221 patients with PNES only had the inclusion criteria and were studied. Forty-eight patients (21.7%) reported that they were driving a car in their routine daily lives. Male sex (odds ratio: 13.2; 95% confidence interval: 4.98–35.45; p = 0.0001) and being employed (odds ratio: 8.08; 95% confidence interval: 3.16–20.69; p = 0.0001) were independently significantly associated with driving.
Conclusion
We observed that only about one-fifth of adult patients with PNES reported driving.
It is important for the scientific community to develop practice guidelines on how to counsel patients and also the related authorities (e.g., department of motor vehicle authorities) on driving restrictions in people who are affected with PNES.
Purpose
The purpose of this study was to prospectively validate a care pathway for psychogenic nonepileptic seizures (PNES) in a pediatric setting. The pathway was developed based on a previous study of patients at our center, which demonstrated positive treatment outcomes of 80% full or partial remission. Sequentially referred patients with PNES in the validation cohort received care prospectively according to the pathway algorithm. It was hypothesized that the validation cohort would achieve outcomes similar to that of the development cohort as a result of standardized care.
Method
We performed a retrospective chart review of 43 children sequentially referred, assessed, and treated within a specialized neurology psychology service for suspected PNES over a 5-year period. The majority of patients (n = 41, 95%) met diagnostic criteria for probable, clinically established, or documented PNES, according to the International League Against Epilepsy (ILAE) criteria.
Results
Ages ranged from 6 to 18 years of age at time of diagnosis, with the majority of patients being female (n = 29, 67%) and adolescent (n = 31, 72%). There was a high level of adherence to the care algorithm (n = 34, 84%). The development and validation cohorts were similar across demographic, clinical, and psychological characteristics. Standardized care resulted in high rates of full (n = 27, 63%) and partial (n = 12, 28%) remission, as self-reported at discharge. A 96% decrease in mean monthly frequency of total PNES events was also observed at discharge, as was a significant reduction in healthcare utilization related to PNES (74% fewer ambulance calls and 85% fewer emergency department (ED) visits). Post hoc analyses demonstrated that duration of PNES illness longer than 12 months (at diagnosis) increased odds of not achieving full remission by discharge (odds ratio = 5.94, p = 0.02). Developmental period of onset (child versus adolescent), having abnormal electroencephalogram (EEG) result, previous concussion, chronic versus acute stressor, more than one PNES event type, or additional functional neurological symptoms did not significantly impact treatment response.
Conclusions
This study demonstrates, for the first time prospectively in a pediatric setting, that standardized care for PNES leads to improved clinical outcomes and reduced healthcare utilization. Delayed diagnosis and treatment of PNES longer than 12 months also appears to be associated with less favorable outcomes in children.
Purpose:
The purpose of the study was to review the literature on the terminologies for psychogenic nonepileptic seizures (PNES) and make a proposal on the terminology of this condition. This proposal reflects the authors' own opinions.
Methods:
We systematically searched MEDLINE (accessed from PubMed) and EMBASE from inception to October 10, 2019 for articles written in English with a main focus on PNES (with or without discussion of other functional neurological disorders) and which either proposed or discussed the accuracy or appropriateness of PNES terminologies.
Results:
The search strategy reported above yielded 757 articles; 30 articles were eventually included, which were generally of low quality. "Functional seizures" (FS) appeared to be an acceptable terminology to name this condition from the perspective of patients. In addition, FS is a term that is relatively popular with clinicians.
Conclusion:
From the available evidence, FS meets more of the criteria proposed for an acceptable label than other popular terms in the field. While the term FS is neutral with regard to etiology and pathology (particularly regarding whether psychological or not), other terms such as "dissociative", "conversion", or "psychogenic" seizures are not. In addition, FS can potentially facilitate multidisciplinary (physical and psychological) management more than other terms. Adopting a universally accepted terminology to describe this disorder could standardize our approach to the illness and facilitate communication between healthcare professionals, patients, their families, carers, and the wider public.
Objectives:
The objectives of this study were 1) to review the literature about "job/employment and psychogenic nonepileptic seizures (PNES)" and 2) to gather the views of neurologists and psychiatrists on the issue of job consultation in patients with PNES.
Methods:
Phase one involved a systematic literature review; phase two involved the collection of the views of neurologists and psychiatrists, practicing in Fars province, Iran, on the issue of job consultation in patients with PNES. A questionnaire was designed for the purpose of this study.
Results:
No studies were identified by the systematic review process on the issue of job consultation in patients with PNES. Of the 87 health-care professionals approached, 63 responded to the survey (response rate: 72%). Respondents included 31 neurologists and 32 psychiatrists. In response to the question "Should all patients with PNES be counseled to pursue any job or profession they would like?", 17 (55%) neurologists and 19 (59%) psychiatrists answered "no" (p = 0.8).
Conclusion:
While it is possible that some patients with PNES are more likely than other people in the general public to be involved in job-related difficulties (performing duties related to any job, accidents, etc.), there is currently no evidence supporting or refuting this proposition. However, in this study, the majority of the health-care professionals, who often deal with these patients, believed that not all patients with PNES should be counseled to pursue any job or profession they would like (i.e., there should be some restrictions).
“It’s all in your head” is a phrase sometimes said by physicians to patients presenting with symptoms unexplained by medical disease. As a neurologist specializing in neuropsychiatry, nothing bothers me more than overhearing medical colleagues proclaim this one-liner at the bedside or snicker about these patients during rounds. Unbeknownst to them, I also hear my patients’ version of being on the other end of this phrase and find myself constantly trying to repair the damage that these words can cause. Whether physicians like to admit it or not, medically unexplained symptoms encompass a vast terrain of clinical practice. In neurology, these symptoms fall under functional neurological disorder, but every specialty has their own variants and favored terminologies (eg, chronic fatigue syndrome, fibromyalgia). The inadequate management of this segment of medicine represents a silent epidemic that is slowly eroding patient-physician relationships, perpetuating unnecessary disability, and straining health care resources.
Objective
We aimed to evaluate the excess direct and indirect costs associated with nonepileptic seizures.
Methods
From the Danish National Patient Registry (2011–2016), we identified 1057 people of any age with a diagnosis of psychogenic nonepileptic seizures (PNESs) and matched them with 2113 control individuals. Additionally, 239 partners of patients with PNES aged ≥ 18 years were identified and compared with 471 control partners. Direct costs included frequencies and costs of hospitalizations and outpatient use weighted by diagnosis-related group, and specific outpatient costs based on data from the Danish Ministry of Health. The use and costs of drugs were based on data from the Danish Medicines Agency. The frequencies of visits and hospitalizations and costs of general practice were derived from National Health Security data. Indirect costs included labor supply-based income data, and all social transfer payments were obtained from Coherent Social Statistics.
Results
A higher percentage of people with PNES and their partners compared with respective control subjects received welfare benefits (sick pay, disability pension, home care). Those with PNES had a lower employment rate than did controls for equivalent periods up to three years before the diagnosis was made. The additional direct and indirect annual costs for those aged ≥ 18 years, including transfers to patients with PNES, compared with controls, were €33,697 for people with PNES and €15,121 for their partners.
Significance
Psychogenic nonepileptic seizures have substantial socioeconomic consequences for individual patients, their partners, and society.
Background:
In the biopsychosocial formulation of functional neurological (conversion) disorder (FND), little is known about relationships between social behavior and brain anatomy. We hypothesized that social behavior would relate to brain areas implicated in affiliative behaviors and that social network size would correlate with symptom severity and predisposing vulnerabilities in FND.
Methods:
This neuroimaging pilot probed how social network size, as measured by the Social Network Index, related to structural brain profiles in 23 patients with motor FND (15 woman and 8 men). FreeSurfer cortical thickness and subcortical volumetric analyses were performed correcting for multiple comparisons. Stratified analyses compared FND patients with a low social network size to matched healthy controls. Secondary exploratory analyses in an expanded sample of 38 FND patients investigated relationships between social network size, risk factors and patient-reported symptom severity.
Results:
Adjusting for age and gender, neuroimaging analyses showed that social network size positively correlated with left nucleus accumbens and hippocampal volumes in patients with FND; stratified analyses did not show any group-level differences. In individuals with FND, social network size correlated with health-related quality of life, graduating college, working full-time and a non-epileptic seizure diagnosis; social network size inversely related to lifetime trauma burden, post-traumatic stress disorder severity and age.
Limitations:
Only patient-reported scales were used and social network size information was not collected for healthy subjects.
Conclusions:
This neuroimaging pilot adds to the literature linking affiliation network brain areas to pro-social behaviors and enhances the biopsychosocial conceptualization of FND.
Purpose:
The aim of this multicenter international cross-cultural study was to compare clinical variables in a large sample of people with adult-onset psychogenic nonepileptic seizures (PNES).
Methods:
In this retrospective study, we evaluated persons with documented PNES, who were older than 16 years of age at the onset, from four countries (i.e., Iran, Brazil, Venezuela, and Argentina) regarding their age, gender, PNES semiology, and possible predisposing factors.
Results:
We included 389 patients (244 from Iran, 66 from Brazil, 51 from Venezuela, and 28 from Argentina). Age at diagnosis was 32 ± 9 years (range: 17-64 years), and age at the onset of seizures was 27 ± 8 years (range: 17-49 years). There was a female predominance in all countries. The demographic characteristics and factors associated with PNES were similar among the countries. However, there were significant semiological differences among the countries.
Conclusion:
This study corroborates the notion that PNES share more similarities than differences cross-culturally and across international borders. However, the background determined by cultural, ethnic, and religious differences may influence the semiology of PNES. Further cross-cultural studies involving more than two continents may advance our understanding of PNES.
Purpose:
We compared various clinical characteristics of pediatric-onset psychogenic nonepileptic seizures (PNES) between patients from five countries. The purpose of this study was to advance our understanding of pediatric-onset PNES cross-culturally.
Methods:
In this retrospective study, we compared consecutive patients with PNES with an age at onset of 16 years and younger from epilepsy monitoring units in Iran, Brazil, the USA, Canada, and Venezuela. Age, gender, age at seizure onset, seizure semiology, predisposing factors, and video-EEG recordings of all patients were extracted. Pearson Chi-Square, one-way ANOVA and Bonferroni correction tests were used for statistical analyses.
Results:
Two hundred twenty-nine patients were studied (83 from Iran, 50 from Brazil, 39 from Canada, 30 from the USA, and 27 from Venezuela). Mean age at the onset of seizures was 12.1 ± 3.2 years (range: 4-16 years). The sex ratio of the patients was 1.83: 1 (148 females and 81 males). Clinical characteristics of pediatric-onset PNES showed some significant differences among the nations. However, factors associated with pediatric-onset PNES in these five nations were similar.
Conclusion:
This study underscores how international cross-cultural studies can make important contributions to our understanding of PNES. Patients with pediatric-onset PNES from different countries were similar on many risk factors associated with PNES. This suggests universality in many features of PNES. However, intriguing differences were also noted with regard to seizure semiology, which might be the result of cultural factors.
Objective:
We conducted a prospective cohort study of patients with psychogenic nonepileptic seizures (PNES) to examine the association between adherence with psychotherapy and outcomes, including significant (≥50%) reduction in PNES frequency, PNES freedom, improvement in quality of life, and reduction in emergency department (ED) utilization.
Methods:
A total of 105 participants were referred to receive psychotherapy either at Brigham and Women's Hospital or with a local therapist. We called participants at 12-24 months follow-up and obtained detailed follow-up data from 93 participants (89%). Participants were considered adherent with psychotherapy if they attended at least 8 sessions within a 16-week period starting at the time of referral.
Results:
Adherence with psychotherapy was associated with reduction in seizure frequency (84% in adherent group vs 61% in nonadherent, p = 0.021), improvement in quality of life (p = 0.044), and reduction in ED utilization (p = 0.040), with medium effect sizes; there was no difference in PNES freedom. The association between adherence and ≥50% reduction in PNES frequency persisted when controlling for potential confounders in a multivariate model. Psychotherapy nonadherence was associated with baseline characteristics of self-identified minority status (odds ratio 7.47, p = 0.019) and history of childhood abuse (odds ratio 3.30, p = 0.023).
Conclusions:
Our study is limited in that it cannot establish a causal relationship between adherence with psychotherapy and outcomes, and the results may not generalize beyond the single quaternary care center study site. Among participants with documented PNES, adherence with psychotherapy was associated with reduction in PNES frequency, improvement in quality of life, and decrease in ED visits.
Functional neurological disorder (FND) is a common and highly disabling disorder, but its aetiology remains enigmatic. Conceptually, there has been reduced emphasis on the role of psychosocial stressors in recent years, with a corresponding increase in neurobiological explanations. However, a wealth of evidence supports the role of psychosocial adversities (eg, stressful life events, interpersonal difficulties) as important risk factors for FND. Therefore, there is a need to integrate psychosocial (environmental) and neurobiological factors (eg, sensorimotor and cognitive functions) in contemporary models of FND. Altered emotional processing may represent a key link between psychosocial risk factors and core features of FND. Here, we summarise and critically appraise experimental studies of emotional processing in FND using behavioural, psychophysiological and/or neuroimaging measures in conjunction with affective processing tasks. We propose that enhanced preconscious (implicit) processing of emotionally salient stimuli, associated with elevated limbic reactivity (eg, amygdala), may contribute to the initiation of basic affective/defensive responses via hypothalamic and brainstem pathways (eg, periaqueductal grey). In parallel, affect-related brain areas may simultaneously exert a disruptive influence on neurocircuits involved in voluntary motor control, awareness and emotional regulation (eg, sensorimotor, salience, central executive networks). Limbic-paralimbic disturbances in patients with FND may represent one of several neurobiological adaptations linked to early, severe and/or prolonged psychosocial adversity. This perspective integrates neurobiological and psychosocial factors in FND and proposes a research agenda, highlighting the need for replication of existing findings, multimodal sampling across emotional response domains and further examination of emotional influences on sensorimotor and cognitive functions in FND populations.
Comorbid epilepsy and psychogenic nonepileptic seizures (PNES) represent a serious challenge for the clinicians. However, the frequency, associations, and outcomes of dual diagnosis of epilepsy and PNES are unclear. The aim of the review was to determine the frequency, correlates, and outcomes of a dual diagnosis. A systematic review of all published observational studies (from inception to Dec. 2016) was conducted to determine the frequency, correlates, and outcomes of dual diagnosis. We included studies of individuals of any age reporting a dual diagnosis of epilepsy and PNES. All observational study designs were included with the exception of case reports and case series with fewer than 10 participants. The mean frequency of epilepsy in patients with PNES across all studies was 22% (95% confidence intervals [CI] 20 to 25%, range: 0% to 90%) while the mean frequency of PNES in patients with epilepsy was 12% (95% CI 10 to 14%, range: 1% to 62%). High heterogeneity means that these pooled estimates should be viewed with caution. A number of correlates of dual diagnosis were reported. Some studies delineated differences in semiology of seizures in patients with dual diagnosis vs. PNES or epilepsy only. However, most of the correlates were inconclusive. Only a few studies examined outcome in patients with dual diagnosis. Dual diagnosis is common in clinical practice, especially among patients referred to specialized services, and requires careful diagnosis and management.
Insecure attachment is a predisposing risk factor for the development of functional neurological disorder (FND). There is limited research investigating connections between attachment styles, other predisposing vulnerabilities, and symptom severity in patients with motor FND. By using a within-group design with prospective data collection, the authors performed univariate tests followed by multivariate linear regressions to investigate neuropsychiatric factors associated with four attachment styles (secure, fearful, preoccupied, and dismissing) among 56 patients with motor FND (mean age=40.2 years [SD=13.0]; women, N=41; men, N=15). In univariate analyses, fearful attachment style was associated with self-reported adverse life event burden, alexithymia, dissociation, depression, anxiety, impaired stress coping skills, functional neurologic symptom severity, and marital status. In a multivariate stepwise linear regression analysis, childhood abuse, alexithymia, depression, and not being married independently predicted fearful attachment. In a post hoc analysis, childhood sexual and emotional abuse were each independently associated with fearful attachment tendencies. There were no independent predictors of secure, preoccupied, or dismissing attachment styles in this study population. Future studies with larger cohorts are needed to investigate nuanced relationships among predisposing vulnerabilities for the development of FND, as well as potential links between risk factors, functional neurologic symptom severity, and clinical outcomes.
Purpose:
Employment is a key social determinant of health. People who are unemployed typically have worse health than those employed. Illness and disability can result in unemployment and be a barrier to regaining employment. We combined a systematic review and knowledge synthesis to identify both studies of employment interventions in health care settings and common characteristics of successful interventions.
Methods:
We searched the peer-reviewed literature (1995-2017), and titles and abstracts were screened for inclusion and exclusion criteria by 2 independent reviewers. We extracted data on the study setting, participants, intervention, methods, and findings. We also conducted a narrative synthesis and iteratively developed a conceptual model to inform future primary care interventions.
Results:
Of 6,729 unique citations, 88 articles met our criteria. Most articles (89%) focused on people with mental illness. The majority of articles (74%) tested interventions that succeeded in helping participants gain employment. We identified 5 key features of successful interventions: (1) a multidisciplinary team that communicates regularly and collaborates, (2) a comprehensive package of services, (3) one-on-one and tailored components, (4) a holistic view of health and social needs, and (5) prospective engagement with employers.
Conclusions:
Our findings can inform new interventions that focus on employment as a social determinant of health. Although hiring a dedicated employment specialist may not be feasible for most primary care organizations, pathways using existing resources with links to external agencies can be created. As precarious work becomes more common, helping patients engage in safe and productive employment could improve health, access to health care, and well-being.
Background:
The relationships between baseline neuropsychiatric factors and clinical outcome in patients with functional neurological disorder (FND)/conversion disorder remain poorly understood.
Objective:
This prospective, naturalistic pilot study investigated links between predisposing vulnerabilities (risk factors) and clinical outcome in patients with motor FND engaged in usual care within a subspecialty FND clinic.
Methods:
Thirty-four patients with motor FND were enrolled and completed baseline and 6-month follow-up psychometric questionnaires. Univariate screening tests followed by multivariate linear regression analyses were used to investigate neuropsychiatric predictors of 6-month clinical outcome in patients with motor FND.
Results:
In univariate analyses, baseline secure attachment traits and depression as measured by the Relationship Scales Questionnaire and Beck Depression Inventory-II positively correlated with improved Patient Health Questionnaire-15 scores. In a multivariate linear regression analysis adjusting for the interval time between baseline and follow-up data collection, baseline secure attachment and depression scores independently predicted improvements in Patient Health Questionnaire-15 scores. In additional analyses, patients with a diagnosis of psychogenic nonepileptic seizures compared to individuals with other motor FND subtypes showed a trend toward worse 6-month physical health outcomes as measured by the Short Form Health Survey-36.
Conclusion:
Future large-scale, multi-site longitudinal studies are needed to comprehensively investigate neuropsychiatric predictors of clinical outcome in patients with motor FND, including functional weakness, functional movement disorders, and psychogenic nonepileptic seizures.
Objectives:
Pediatric psychogenic nonepileptic seizures (PNES) is a functional somatic symptom condition with significant health-care service burden. While both family and individual factors play an important role in the development and maintenance of PNES, little is known about what predicts urgent health-care use in families with children who have PNES. The aim of the current study was to explore whether child coping and parental bonding styles influence the decision to seek urgent medical care in these families.
Methods:
Data were analyzed from youth of age 8-18 years, 47 with PNES, and their 25 sibling controls. Parents provided the number of youth emergency room visits and hospitalizations in the preceding year. Youth completed a questionnaire about their coping styles and a measure about their mothers' and fathers' bonding styles. Using a mixed model with family as a random effect, we regressed urgent health-care use on participant type (youth with PNES or sibling), parental bonding style, and youth coping style, controlling for number of child prescription medications.
Results:
Higher urgent health-care use was associated with having PNES, coping via monitoring, and perceiving one's father to be rejecting and overprotective. Lower urgent health-care use was associated with coping via venting and with perceiving one's mother to be caring and overprotective.
Conclusions:
This study provides preliminary empirical support for family-based clinical efforts to reduce child urgent health-care use by enhancing effective child coping skills and improving parental response to child impairment and distress in families with youth with PNES.
A recent systematic synthesis of qualitative research demonstrated that patients with psychogenic nonepileptic seizures (PNES) often experience unsatisfactory encounters with health care practitioners (HCPs). It is important to understand such interactions from the perspective of those responsible for delivering care. This systematic review aimed to examine the attitudes and perceptions of HCPs toward PNES. A systematic search of 3 databases (Web of Science, PubMed, and CINAHL) was conducted in November 2017. Studies from around the world published after 1997 using qualitative or quantitative methodologies were reviewed. An interpretative stance was taken to analyze the data utilizing a grounded theory approach. The quality of studies included was assessed using the Mixed Methods Appraisal Tool. Overall, 30 separate studies capturing the views of at least 3900 professionals were included. Five concepts emerged from the analysis: (1) HCPs’ responses demonstrated uncertainty about many aspects of PNES, including diagnosis and treatment; (2) HCPs understood PNES in dualistic terms, perceiving the condition as largely associated with psychological factors; (3) patients with PNES were considered challenging and frustrating; (4) HCPs held mixed or contested views about who is responsible for treating patients with PNES; and (5) PNES was viewed as less severe or disabling than epilepsy and associated with a greater degree of volition. Although some HCPs have an excellent understanding of PNES, the views of many give rise to concern. The number of qualitative studies that directly ask HCPs about their perceptions of PNES is limited. Moreover, some professional groups (ie, mental health specialists) are underrepresented in current research. This study reveals a demand for additional training. However, effort is needed also to change the attitudes of some practitioners toward PNES.
Background
Insecure attachment and maladaptive coping are important predisposing vulnerabilities for Functional Neurological Disorders (FND)/Conversion Disorder, yet no prior structural neuroimaging studies have investigated biomarkers associated with these risk factors in FND populations. This magnetic resonance imaging study examined cortical thickness and subcortical volumes associated with self-reported attachment and coping styles in patients with FND. We hypothesized that insecure attachment and maladaptive coping would relate to limbic-paralimbic structural alterations.
Methods
FreeSurfer cortical thickness and subcortical volumetric analyses were performed in 26 patients with motor FND (21 women; 5 men) and 27 healthy controls (22 women; 5 men). For between-group comparisons, patients with FND were stratified by Relationship Scales Questionnaire, Ways of Coping Scale-Revised, and Connor-Davidson Resilience Scale scores. Within-group analyses were also performed in patients with FND. All analyses were performed in the complete cohort and separately in women only to evaluate for gender-specific effects. Cortical thickness analyses were whole-brain corrected at the cluster-wise level; subcortical analyses were Bonferroni corrected.
Results
In women with FND, dismissing attachment correlated with reduced left parahippocampal cortical thickness. Confrontive coping was associated with reduced right hippocampal volume, while accepting responsibility positively correlated with right precentral gyrus cortical thickness. These findings held adjusting for anti-depressant use. All FND-related findings were within the normal range when compared to healthy women.
Conclusion
These observations connect individual-differences in limbic-paralimbic and premotor structures to attachment and coping styles in FND. The relationship between parahippocampal thickness and dismissing attachment may indicate aberrant social-emotional and contextual appraisal in women with FND.
Objective:
Studies from a small number of countries suggest that patients with psychogenic nonepileptic seizures (PNES) have limited access to diagnostic and treatment services. The PNES Task Force of the International League Against Epilepsy (ILAE) carried out 2 surveys to explore the diagnosis and treatment of PNES around the world.
Methods:
A short survey (8 questions) was sent to all 114 chapters of the ILAE. A longer survey (36 questions) was completed by healthcare professionals who see patients with seizures. Questions were separated into 5 sections: professional role, diagnostic methods, management, etiology, and access to health care.
Results:
Responses were received from 63 different countries. The short survey was completed by 48 ILAE chapters, and the long survey by 1098 health professionals from 28 countries. PNES were recognized as a diagnostic and therapeutic problem in all countries. Trauma and mental health issues were most commonly recognized as etiologic factors. There was a clear relationship between income and access to diagnostic tests and expertise. Psychological therapy was most commonly considered the treatment of choice. Although financial difficulties were the most commonly reported problem with service access in low-income countries, in all countries stigma, lack of popular awareness, and lack of information posed challenges.
Significance:
This global provider survey demonstrates that PNES are a health problem around the world. Health care for PNES could be improved with better education of healthcare professionals, the development of reliable and simple diagnostic procedures that do not rely on costly tests, and the provision of accessible information.
Objectives:
This study examines whether drivers suffering from epilepsy, chronic alcoholism and/or hazardous drinking, psychoactive substance abuse, other diseases of the nervous system, mental and behavioural disorders, cardiovascular diseases, severe diabetes, and severe eye diseases are at a greater risk of causing traffic accidents and traffic violations than drivers that cause accidents and violations without these diagnoses.
Methods:
A case control study was carried out. The cases were drivers checked by a special medical committee in the period observed suffering from the diseases listed above. Matched controls were taken from the cohort of those that caused accidents and violations during the same period observed. The descriptive statistics were followed by calculation of correlations, t-tests and χ2, and the odds ratio.
Results:
Drivers with referrals for diseases of the nervous system are five times more likely to cause a traffic accident compared to controls (OR=5.18; 95% CI=2.59-10.34); in addition, a high risk is associated with drivers with mental and behavioural disorders (OR=3.64; 95% CI=1.91-6.94), drivers with epilepsy (OR=1.99; 95% CI=1.01-3.92), and drivers addicted to alcohol (OR=1.71; 95% CI=1.01-2.89).
Conclusion:
Drivers suffering from addiction, a disease of the nervous system, or epilepsy are more likely to cause a traffic accident, which is a contribution to the inconclusive findings of previous studies. The multiple reasons for risks of patients suffering from mental and behavioural disorders need to be further investigated.
This volume describes the basics for short- and long-term treatment of Psychogenic Non-Epileptic Seizures (PNES) in children. The text acknowledges that the disorder, though rare and highly morbid, is treatable when it is not misdiagnosed. Given the limited diagnostic and clinical training offered to clinicians, this book aims to equip professionals with the tools needed to improve the poor quality of life of youth with PNES.
The text begins by introducing the main features of the disorder and the problems involved in diagnosing PNES in children. It then describes techniques to overcome these problems in order to make a reliable and valid diagnosis of PNES, as well as provide feedback on the diagnosis and treatment plan. The last section describes the indications for cognitive behavior therapy for youth with PNES and suggested treatment paradigms. Incorporation of do’s and don’ts and their relevant clinical examples in all sections of the proposed guide provide the reader with skills and techniques. The book also includes an appendix with resources for parents, children, and school nurses and teachers, relaxation techniques for the child and parents, templates of letters for the child’s school about the condition and behavior management plan, templates of supporting letters from epileptologists and primary care physicians, CBT treatment paradigm, and information on individual supervision, workshops and webinars.
Written by the few experts in this area, Pediatric Psychogenic Non-Epileptic Seizures is the ultimate guide for psychiatrists, psychologists, nurses, primary care physicians, neurologists, epileptologists, social workers, nurses, school counselors, and all medical professionals working with children experiencing seizures.