Epilepsy & Behavior 37 (2014) 276–281
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Providers' perspectives on treating psychogenic nonepileptic seizures: Frustration and hope Katharine K. McMillan a,⁎, Mary Jo Pugh b, Hamada Hamid c, Martin Salinsky d, Jacqueline Pugh a,e, Polly H. Noël a, Erin P. Finley a,h, Luci K. Leykum a, Holly J. Lanham f, W. Curt LaFrance Jr. g a
South Texas Veterans Health Care System, San Antonio, Texas University of Texas Health Science Center at San Antonio, San Antonio, TX, USA South Texas Veterans Health Care System and VA Epilepsy Centers of Excellence, San Antonio, TX University of Texas Health Science Center at San Antonio, San Antonio, TX, USA VA Connecticut Healthcare System and VA Epilepsy Centers of Excellence, USA Yale University, New Haven, CT, USA d Portland Veterans Affairs Medical Center and VA Epilepsy Centers of Excellence, Portland, Oregon Health & Sciences University, Portland, OR, USA e South Texas Veterans Health Care System, San Antonio, TX, USA f McCombs School of Business, University of Texas, Austin, TX USA g Providence Veterans Affairs Medical Center and Neuropsychiatry and Behavioral Neurology Division, Rhode Island Hospital, Brown University, Alpert Medical School, Providence, RI, USA h Department of Medicine, and Department of Psychiatry, UT Health Science Center at San Antonio, San Antonio, TX USA b c
a r t i c l e
i n f o
Article history: Received 5 May 2014 Revised 30 June 2014 Accepted 1 July 2014 Available online 13 August 2014 Keywords: Nonepileptic seizures Diagnosis Treatment Veterans Practitioners Cognitive behavioral therapy
a b s t r a c t Recent diagnostic and treatment advances in psychogenic nonepileptic seizures (PNES) have the potential to improve care for patients, but little is known about the current state of PNES care delivery in the Veterans Health Administration (VA). We conducted semistructured interviews with 74 health-care clinicians and workers in the VA, eliciting provider perceptions of PNES care. Data were analyzed according to principles of Grounded Theory. The results revealed variation in care and two emergent domain themes of frustration and hope. Frustration was manifest in subthemes including Complexity, Patient Acceptance, Uncertainty About Treatment, Need for Evidence-based Treatment, and Failure of Cross-Disciplinary Collaboration between neurologists and mental health providers. Hope encompassed subthemes of Positive Attitudes, Developing Cross-Disciplinary Treatment, and Specific PNES Care. Increased resources for diagnosing, treating, and researching PNES have improved awareness of the disorder. More research is needed to understand patients' and caregivers' perceptions of PNES care. © 2014 Elsevier Inc. All rights reserved.
1. Introduction The past decade has seen growth in developing treatments for patients with psychogenic nonepileptic seizures (PNES), classified as a somatoform disorder that resembles epileptic seizures but is not caused by paroxysmal neuronal discharges or other electrographic physiologic abnormalities [1]. The International League Against Epilepsy has identified this condition as a major neuropsychiatric aspect of patients with seizures [2]. Psychogenic nonepileptic seizures are one of the most common disorders diagnosed in epilepsy monitoring units (EMUs) [3], due, in part, to wider availability of video-electroencephalography (VEEG) [4], and account for 25% of EMU discharge diagnoses from civilian and Veterans Health Administration (VA) settings [3]. Proper diagnosis is often delayed [5,6], and patients misdiagnosed with epilepsy risk iatrogenic harm from long-term antiepileptic drug (AED) therapy [7],
⁎ Corresponding author at: University of Texas Health Science Center at San Antonio, Department of Epidemiology & Biostatistics, MSC 7933, San Antonio, TX 78229-4404, USA. Tel.: +1 210 410 4632 (preferred), Tel.: +1 210 617 5300x17355; fax: + 1 210 617 5344. E-mail addresses: [email protected], [email protected] (K.K. McMillan).
http://dx.doi.org/10.1016/j.yebeh.2014.07.001 1525-5050/© 2014 Elsevier Inc. All rights reserved.
experience poor health-related quality of life [8], endure significant disability [9], and incur high medical care costs [3,10]. Once the diagnosis is made, the question for providers and patients becomes, “What do we do next?” Data on optimal treatment strategies remain unclear, and most neurologists prefer psychological therapy such as cognitive behavioral therapy (CBT) [2,11–13], but in the absence of fully-powered randomized controlled trials of treatment strategies, a Cochrane systematic review found insufficient evidence to recommend CBT or any other treatment [14]. Many mental health professionals remain untrained in treating somatoform disorders [15], and, consequently, patients with PNES may find themselves on the border between neurology and psychiatry, with neither neurologists nor psychiatrists fully responsible for treating the condition [16,17]. Despite diagnostic and treatment advances and greater attention paid to this condition, many patients remain untreated. As part of a larger study examining the impact of the VA's Epilepsy Centers of Excellence (ECOE), a nationwide referral system of tertiary epilepsy care centers conceptually similar to academic centers of excellence implemented in 2010, we explored health-care professionals' perceptions of care for patients with seizure disorders. In theory, the ECOE model of care represents an important opportunity to improve
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PNES care by providing resources and referral pathways that were not equally available before its implementation within the VA and are generally not available outside of integrated health systems. We examined VA epilepsy care team members' perceptions of PNES care within the backdrop of ECOE implementation. Although several surveys of physicians' attitudes and treatment practices have been published [13,18, 19], to our knowledge, no comprehensive qualitative study of PNES care in the VA or other integrated health-care systems has been published. The aims of this study were to describe providers' perceptions of PNES care and to explore the impact of the ECOE on PNES care. 2. Methods 2.1. Study design, setting, and protocol We used semistructured interviews to gain insight into the experiences of epilepsy health-care team members. The semistructured format is widely used in public health research [20] and is valuable when little is known about the phenomena under investigation [20, 21]. We contacted over 750 physicians and neurology clinical personnel through email (e.g., epileptologists and nurse practitioners) and interviewed 79 individuals by telephone from February to May 2013. All respondents verbally consented to have their interviews recorded, and none refused the interview. A social cognitive psychologist (KM) conducted the majority of interviews. Along with ten other questions related to general epilepsy care, two questions specific to PNES care were given to respondents: “After monitoring, patients are often identified as having nonepileptic events/psychogenic nonepileptic seizures. Can you describe the follow-up care of those patients?” and “How satisfied are you with the current treatment of these patients?” We collected data from each of the 16 ECOE hubs and 33 spoke facilities that refer patients for specialty epilepsy care either to an ECOE or to a university affiliate. Spoke facilities were selected from a list of 70 consortium sites with a formal relationship to an ECOE and from a list of VA neurologists and physicians employed by the VA nationally. Interviews ranged from 5 to 60 min and averaged 15–20 min with the portion of the interview pertaining to PNES averaging about 3 to 5 min. Details of the methodology are reported elsewhere [22]. The VA Central Institutional Review Board approved this study. 2.2. Qualitative analysis Interviews were recorded digitally, uploaded to NVivo qualitative data analysis software (QSR International Pty Ltd. Version 10, 2012), and transcribed in NVivo. We used an analytical approach derived from Grounded Theory [21]. Initial analysis began with broad coding of all transcribed text related to PNES (KM). The research team (MJ, JP, EF, PN, HL, and LL), which represented a multidisciplinary group with expertise in qualitative methodology, read the text-coded content line by line. The research team generated codes (free nodes) to capture themes that frequently recurred in interviews, such as ‘delay to treatment’ and ‘lack of specific PNES care’, and met repeatedly to review and refine the coding schema. Two researchers (KM and MP) organized the free codes (‘delay to treatment’) into tree nodes (parent–child nodes) such as ‘Barriers Specific to PNES Care.’ Texts were coded according to this scheme. A board-certified neurologist/psychiatrist (HH), blinded to the identities of the participants, details of the interviews, and coding schema, conducted independent analysis of the textual data. After coding those portions of transcripts relevant to PNES care, HH discussed emergent themes and subthemes with members of the research team in reiterative coding sessions. HH also provided insight into the perspectives of clinicians and the dynamics of the ECOE and VA system. Feedback from all team members was integrated into a single final coding schema, which was applied across the set of transcripts and reviewed in iterative sessions by the team for consistency and
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accuracy. All discrepancies in coding were discussed until consensus was achieved. 3. Results Five of the 79 interviews were excluded from analysis for lack of reference to PNES. Table 1 shows participants' roles. The majority were neurologists (67%). More than half of the participants (57%) were employed at ECOEs and the remainder were employed at spoke facilities that referred patients to the ECOE (38%) or affiliated university hospital for tertiary epilepsy care services (5%). Fig. 1 displays a word cloud depicting words scaled in size to frequency and colocation. Data analysis indicated substantial variation in care provided to patients with PNES that included varying approaches to management of the patient's care and differing patterns of referral. Some neurologists preferred to retain the patient in the neurology clinic, while many provided a limited number of follow-up sessions “to ease the patient into mental health services,” and some discharged the patient to primary care after one follow-up session. Some clinicians referred patients to behavioral health for therapy, psychiatry for pharmacological intervention and/or therapy, and CBT for PNES care where available. We identified two major themes—frustration and hope—and have selected statements to illustrate these themes. Statements have been edited to maintain confidentiality and enhance clarity. 3.1. Frustration theme 1: Disorder-related Clinicians perceived the condition as challenging to diagnose and treat (Table 2). In the subtheme Diagnosis, clinicians discussed the problem of nondiagnostic VEEGs (no events are captured) as up to 40% of VEEG sessions can be nondiagnositic. Lack of certainty left some clinicians hedging their bets and continuing to prescribe antiepileptic drugs (AEDs). The subtheme Complexity captures the notion that the disorder “comes in many forms” for which “there is no cookbook solution.” Psychogenic nonepileptic seizures have many links to posttraumatic stress disorder (PTSD), traumatic brain injury (TBI), emotional trauma, abuse, sexual abuse, and military sexual abuse. These “layers and layers of issues” and heterogeneity of the disorder contribute to the complexity of treatment. The subtheme Stigma, which Veterans often labor under, is associated with epilepsy and mental illness. Veterans decline mental health services for fear of being labeled as “crazy.” Clinicians recognized that their own negative attitudes contribute to stigma particularly when they held suspicions about patients whose symptoms seemed “too convenient” and who might be “faking it.” 3.2. Frustration theme 2: Provider Attitudes Respondents expressed frustrations in the subtheme Attitudes About Challenging Patients (Table 2) as some patients were described as “difficult to treat”, “tough”, “beyond help”, and “hopeless” because “they have been doing this for so long.” The subtheme Patient
Table 1 Respondents' roles at VA medical centers. Role
ECOE
Spoke
Total N (%)
Neurologist/epileptologist Nurse practitioner/nurse EEG technologist Other roles Total
23 10 5 5 43
25 3 1 2 31
48 (65%) 13 (18%) 6 (8%) 7 (10%) 74 (100%)
Key: ECOE, Veterans Administration Epilepsy Centers of Excellence; N, number; “Other roles” includes primary care physicians, neuropsychologists, and neurointerventional radiologists.
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care” with a limited number of follow-up visits, but some clinicians retained their patients to safeguard them from potential iatrogenic harm, reduce health-care service usage, and provide emotional support. Some clinicians felt that caring for these patients was a “good use of my time” and took patients' concerns “seriously.” Many respondents did their best to educate the patient to help them reduce their anxiety so that “the patient is not going, ‘OMG’, every time he has a seizure.” In the subtheme Patient in Limbo, respondents noted that patients were not always welcomed in neurology or mental health clinics—“nobody wants to deal with them.” Patients did not feel “comfortable” in mental health care and were not able to receive the care they needed in neurology. In the subtheme Need for Evidence-based Treatment, respondents noted that there was “not enough scientific research showing there is a treatment with benefits.” About half of those interviewed expressed some level of dissatisfaction with current treatment, largely for the lack of targeted, demonstrably effective treatment available at their facility. Moreover, respondents believed that the VA needed “a more uniform set of guidelines to treat PNES.” 3.4. Frustration theme 4: The VA System
Fig. 1. Word cloud depicting terms describing PNES care. High-frequency words denoted by heavy size/weight of font; arrangement of words indicates their colocation in the texts.
Acceptance was seen as an issue because patients sometimes rejected the diagnosis, found the diagnosis confusing, and had difficulty understanding its relationship to mental health. In the subtheme Primary/Secondary Gain, several respondents indicated that patients may be “gaming the system” for disability compensation and suggested that patients sometimes decline VEEG or are “no shows” because they fear that a diagnosis would incur a loss of benefits. As noted by one respondent, “Everything that occurs in the VA occurs against the backdrop of disability", and patients may have “little motivation to engage in their care,” a view that was echoed by several respondents. 3.3. Frustration theme 3: Treatment of PNES Providers expressed frustration in the subtheme Uncertainty About Treatment (Table 3). Some respondents believed that most mental health practitioners were “not interested” and that there are “few good options” in treating somatoform disorders. Because many respondents eventually discharged their patients to primary care, few were aware of how well (or poorly) the patient fared. Respondents revealed varying views in who should be responsible for the patient in the subtheme Managing the Patient in Neurology. Nearly half of the neurologists “eased the patient into mental health
In the subtheme VA Disability Issues, Veterans with disability status may be unwilling to undergo long-term monitoring out of fear of losing their service connection benefits. Some respondents believed that VA should more clearly articulate the disability status of PNES in order to address the problem of delayed diagnosis. In the subtheme Hub and Spoke and Continuity of Care Issues, the most salient issue for spoke facilities is the lack of resources available for treatment of this condition that are sometimes available at an ECOE. Patients diagnosed at an ECOE but returned to their home facility might be lost to care because of the lack of availability of specialized PNES care at their spoke facility. About one-fifth of the respondents expressed concern that some mental health providers “undercut” the neurologist's diagnosis by telling patients “maybe your seizures are real” and re-referring the patient to neurology in the subtheme Failure of Cross-Disciplinary Collaboration. About half of the respondents expressed the need for collaboration between the neurologist and mental health provider to facilitate treatment and prevent the mental health provider from “being intimidated” by the patient. The subtheme Referral Issues can sometimes result in misdirected or rejected referrals. There was some concern that changing to an ECOE model of care could increase these challenges. Some clinicians expressed concern that the “university option” (i.e., referring patients to a university affiliate for VEEG) would be eliminated and that they would be “forced” to refer patients to an ECOE that was several hundred miles away and “too inconvenient” for patients. Respondents found the referring to be a straightforward process, but obstacles included unavailability of an observer (such as a family member) and rural Veterans' dislike of urban settings (where many ECOEs are based).
Table 2 Frustration domain: themes, subthemes, and selected statements. Themes
Subthemes
Statements
3.1 Disorder-related
Diagnosis
They do not have any spells when they are up there [in the EMU]. I am stuck with ‘Are they real or are they not real?’ Nobody else can tell me if the spells are real or not real. I do not know what else to do with them. That is a big area of frustration. [#35 Neurologist] It is just layer after layer of issues: migraine headaches, sexual abuse, seizures, and trauma. [#19 Pharmacist] I think the stigma of nonepileptic seizures is that ‘oh, I am faking it.’ I discourage that with patients. The problem is a psychiatric issue. [#1 Nurse Practitioner] I sit down and discuss it with them. Some of them are in treatment and some of them are—I hate to say this—beyond help. I mean, they have been doing it for so many years. [#18 Neurologist] The truth? I do not think the patients are too happy. They were expecting something else. “So OK. I do not have seizures. I am let down. I am going to go see a shrink. I don't understand that.” [#65 Nurse Practitioner] That is the other part: the secondary gain. This person is 100% service connected and receives $3000 a month but if we find out he does not have epilepsy, then he is afraid he will lose all his benefits. [#18 Neurologist]
Complexity Stigma 3.2 Provider Attitudes
Attitudes About Challenging Patients Patient Acceptance Primary/Secondary Gain
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Table 3 Frustration domain: themes, subthemes, and selected statements. Themes
Subthemes
3.3 Treatment Uncertainty About Treatment of PNES Managing the Patient in Neurology Patient in Limbo Need for Evidence-based Treatment 3.4 The VA VA Disability Issues System Hub and Spoke and Continuity of Care Issues Failure of Cross-Disciplinary Collaboration Referral Issues
Statements Well, it is difficult because nobody really knows how to treat them. I would say it is an area of frustration. [#48 Neurologist] We sometimes lose these people …. Sometimes they feel neglected. We have some problems getting the communications across. In ideal circumstances, I would manage patients with PNES on some regular interval. [#11 Neurologist] These people take years to deal with. They are not easy fixes. Nobody wants to deal with them. [#35 Neurologist] Many of the mental health people are not sure how to treat nonepileptic seizures. They do not have the treatment training for it. [#21 Nurse Practitioner] I have someone who is 100% service connected for seizures. We are setting him up to go to the ECOE. He said, “I don't want to go to ECOE because what if they find out I don't have epilepsy? I lose all my benefits.” [#18 Neurologist] Part of the problem is that patients are not necessarily from here [ECOE]. For their long-term care, it may be hard for them to come here for frequent and intensive care. It is not really a formalized system so it is definitely a big gap. [#74 Epileptologist] One of the biggest problems in neurology is that we will refer the patient to psychiatry and then the psychiatrist says to the patient, “You may have real seizures.” They send them back. It totally undercuts whatever we do. [#25 Epileptologist] My consults have been rejected, pushed to the side or referred to some other service like memory service, geriatrics, or memory clinic. We do not really have a good way of addressing this patient. We are basically left in limbo. [#34 Neurologist]
the issue of nondiagnositic EMU sessions on a case-by-case basis to clarify treatment of difficult-to-classify patients.
3.5. Hope theme 1: Positive Attitudes Many respondents conveyed hope of improving attitudes toward the patient and disorder (Table 4). In the subtheme Patient, some clinicians believed “these Veterans still require the same respect, understanding, and empathy that Veterans with any other type of illness require.” Many practitioners noted the necessity of validating the patient's feelings and made efforts to ensure that patients felt supported. Respondents emphasized that they stress the possibility of good outcomes to give the patient “a sense of control.” Moreover, respondents expressed positive feelings about caring for these patients. About half of the respondents expressed qualified satisfaction with the treatment offered to patients in the subtheme Treatment. Respondents perceived care as “comparable with and sometimes better than civilian care.” Some respondents stated that the VA's integrated health system enabled referrals to mental health and increased access to mental health providers with competency in trauma-related care. Some noted that the “EMU culture” created by EEG technicians had a “normalizing” effect for patients with PNES and that the “most effective treatment” was communicating the diagnosis to the patient while in the EMU. In the subtheme Disorder, respondents noted that the condition is “taken seriously” and “has a little more respect” than in the past due to increased awareness. Psychogenic nonepileptic seizure research, clinical interest, and expertise in monitoring are “the greatest achievements of the ECOE.” Because the disorder is taken seriously, patients are realizing that “they are not crazy” and “not faking it.” Some clinicians expressed hope that the ECOE could provide additional guidance on
3.6. Hope theme 2: Cross-Disciplinary Treatment In the subtheme Developing a Cross-Disciplinary Team, about onefourth of the facilities represented in our study were developing crossdisciplinary teams composed of a neurologist and mental health care provider (Table 4). One VA medical center was establishing a neurobiology program that encompassed professionals from neurology and psychiatry, neuropsychology, and behavioral health to treat somatoform disorders. Other facilities had programs to rotate psychiatry residents in the neurology department to promote awareness of the disorder. In the subtheme Wish Lists, some respondents expressed a desire to develop a multidisciplinary team similar to epilepsy care teams composed of an epileptologist or neurologist, psychiatrist, psychologist, and/or social worker. Clinicians also discussed having a psychologist who would be part of the neurology department to care for patients. 3.7. Hope theme 3: Specific PNES Care Some respondents believed that patients would have better outcomes if mental health providers had training in treatment for the condition (Table 4). The subtheme Neurology-based Psychoeducation helps patients understand their condition and increases the likelihood of them engaging in psychotherapy. One facility developed and tested structured, manualized group meetings that focused on achieving short-term goals such as anxiety reduction, reducing hospital/ED
Table 4 Hope domain: themes, subthemes, and selected statements. Themes
Subthemes
Statements
3.5 Positive Attitudes
Patient
Some of my most delightful patients are psychogenic nonepileptic seizure patients. I am eager to see them when they come back. It is sometimes easier than dealing with some other disorders that are often disabling. [#7 Epileptologist] The most effective “treatment” for PNES is making a diagnosis of PNES. [#76 Epileptologist] I think the Veterans are realizing “I am not crazy. They don't think I am faking this.” I think there is a little more respect for the diagnosis. That is the major change I have seen. [#57 Nurse Practitioner] We are building a conjoined behavioral neurology and epilepsy program. We have a little bit of a voice when it comes to neuropsychologists and psychiatrists. [#11 Neurologist] We have often talked about ‘Wouldn't it be nice if we had a psychologist that we paid part of his/her salary?’ Or, even if we hired somebody who had an interest in conversion disorders who we could send all the patients to? [#52 Nurse Practitioner] There is a lot of work that needs to be done [for these patients]. I would like to have more involvement in the psychoeducation process for PNES. [#61 Neuropsychologist] I think that we can offer them better options and streamline things better for them. What actually helps in terms of their care is that our pharmacy is integrated, that their mental health is integrated, and that their medical records are integrated. [#40 Epileptologist] I think PNES care is going to be in telehealth. Only a few people are actually interested in treating it, and the next thing for the VA to do is set up CBT telehealth. We are able to share resources across state lines to provide telehealth for patients with psychogenic seizures. [#66 Neurologist/Psychiatrist]
Treatment Disorder 3.6 Cross-Disciplinary Treatment
Developing a CrossDisciplinary Team Wish Lists
3.7 Specific PNES Care
Neurology-based Psychoeducation System
CBT and Tele-NES
Key: CBT, cognitive behavioral therapy.
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usage, and improving social and work functioning. About a quarter of ECOEs and spokes reported having a psychologist, neuropsychologist, or counselor on staff within the neurology clinic to treat patients with PNES. In the subtheme System, some respondents with university affiliation viewed the VA as having some advantages in treating PNES. The integration of mental health, pharmacy, and other services along with the patient's medical records was perceived as helpful in managing the patient's health. Mental health providers could potentially communicate more effectively with neurologists and others as well as access information about the patient. Many clinicians advocated the VA putting more resources into addressing PNES because doing so would reduce health-care utilization/costs and improve outcomes for patients. Cognitive behavioral therapy-informed psychotherapy for PNES was the therapy of choice. The ECOE has launched a PNES-specific CBT training program and telehealth (eHat) program. Respondents noted that a relatively small number of CBT-trained telehealth providers could treat patients nationwide and that home-based telehealth (homebased via computer over secure VA-provided internet) could provide care for the “sickest patients.” Telehealth clinics based in other facilities were also seen as an option. Implementation of CBT telehealth was seen as feasible, and respondents felt that veterans in rural areas would be especially well served by these telehealth options.
4. Discussion In this study, we systematically assessed provider perceptions of care of patients with PNES and identified key themes. These themes are important in that they reflect the current problems in diagnosis and treatment, as well as attitudes that may shape provider behavior and treatment decisions. While many of these themes reported herein likely resonate among clinicians treating for patients with PNES, few, if any studies, have directly investigated clinicians' experiences of caring for this patient population. We are not aware of any previous research that has attempted to compile and articulate these themes, identifying areas that are of greatest concern. Recent diagnostic and treatment advances move this “orphan disorder without a home” to a shared-care model with a mind/brain perspective in neurology and psychiatry collaboration. The shared-care model pioneered in the ECOE represents an important opportunity for improvement in PNES care [23]. Cross-disciplinary care reduces the risk that mental health providers may reject the diagnosis even when it has been confirmed by VEEG [24] or fail to understand its devastating impact on the patient [15,23]. Lack of collaboration has been linked to high neurology readmission and continuation of AEDs in over 40% of patients diagnosed with PNES years after diagnosis [25]. Various treatment approaches for PNES exist, and publications describing them increase each year [11]. Some of these approaches have been implemented in the VA System. Some initial evidence suggests that patients who receive psychoeducation had a greater potential for improved social outcomes, but seizure frequency was not significantly reduced in open-label trials [26]. The role of psychoeducation may be to help reduce the loss to follow-up as they transition to treatment [27]. Group psychoeducation may have potential for reducing seizures, dissociative/posttraumatic symptoms, and reliance on emotionbased coping strategies, as seen in an uncontrolled open-label study [28]. Fully-powered prospective randomized controlled trials are needed to assess the various approaches. One key area of hope comes from the VA's integrated health-care system. Veterans Health Administration patients are more likely to have access to mental health care than those in nonintegrated systems because the VA's integrated system facilitates referral to mental health, streamlining the process through electronic medical records. In the private sector, there are more challenges to referral, communication, and coordination of care. A number of neurologists who held academic
appointments and practiced in the community favorably compared VA care with care available in the community. In terms of providing effective treatment, we saw hope in the broader availability of evidence-based targeted PNES treatments. Psychotherapy has been shown to decrease seizure frequency of by up 70% in retrospective reports [29,30]. A recent Cochrane review noted that only one randomized control trial (RCT) investigating the effectiveness of CBT in this patient group demonstrated a significant reduction in seizure frequency compared with controls (P b 0.001) [31]. Since the Cochrane review publication and administration of this survey, a multisite, pilot RCT revealed significant reduction of PNES frequency and improvement in depression, anxiety, PTSD symptoms, quality of life, and functioning in patients treated with a psychotherapy treatment workbook for seizures [32]. In contrast, patients treated with standard medical care, or treatment as usual, showed no improvement in seizures, comorbid symptoms, or functioning. This workbook is now in use in the VA for treating Veterans in ECOE clinics and via telehealth program of the VA National Telemental Health Center [33]. Another area of hope is in the potential for reducing delay to correct diagnosis. One key role of the ECOE is to provide VEEG services for Veterans referred from facilities lacking this service. Reducing delay in diagnosis and treatment of PNES is critical from both the patient and provider perspectives. Undiagnosed PNES in Veterans with “the right history” (e.g., TBI and deployment) has the potential to lead to iatrogenic harm from escalating dosages of AEDs or heroic treatment to stop nonepileptic status [7]. Correct diagnosis has been shown to lessen or eliminate seizures in significant numbers of patients, reduces emergency department visits by up to 50% [34], diminishes all types of healthcare utilization [35], and reduces the average number of visits and inpatient stays [10]. Despite limitations in the VA system, the ECOE is perceived as responding to gaps in care and increasing awareness of PNES, and potentially provides insights for PNES care in other integrated systems. The ECOE provides information to clinicians in the VA including emergency department and primary care physicians who play important roles in patient care but may miss potential cases of PN because of misinformation about the condition. By educating providers, the ECOE is trying to reduce the many years patients can spend with the misdiagnosis of epilepsy. The delay in diagnosis is up to five times longer for Veterans than for the civilian sector likely because of stereotypes that PNES affects largely, women, and about 85% of Veterans presenting with psychogenic seizures are male [3,36–38]. Our study was the first large scale qualitative study of providers' perspectives in a national, integrated health-care system. These results have been obtained in the setting of the VA health-care system and patient population which differ significantly from civilians. However, the clinician themes identified by this research largely represent general concerns regarding the diagnosis and treatment of PNES rather than specific issues regarding the VA and Veterans. Our study had several limitations. We did not randomly sample participants, and those who self-selected to participate may have a bias and may not be representative of all epilepsy care providers in the VA. We also did not interview mental health providers in the VA system, and that would have expanded our knowledge about PNES treatment and coordination of care. Moreover, we interviewed a representative sample of personnel from the 16 ECOE sites and referral sites in the VA system. Although many participants provided care in community and academic affiliate settings, we did not survey or compare non-VA providers, who may have access to or knowledge of other PNES resources. Lastly, the majority of interviews were conducted by one individual using a semistructured interview format that allowed for relevant probes and follow-up questions to be asked. This may have introduced an element of bias in that leading questions may have been asked. Lastly, we did not interview patients with PNES or their caregivers for this study whose experiences of care, particularly of the more advanced ECOE offerings of CBT-inspired psychotherapy for PNES, would have been illuminating.
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With these limitations in mind, the results represent a starting point in identifying areas of common concern among clinicians caring for patients with PNES. Future research should explore patients' and caregivers' perceptions of quality of care. Of importance, very little is known about patients' perspectives on the quality of care they receive in the VA or other health-care settings. While several qualitative studies have examined patients' experiences of receiving the diagnosis of PNES [39–41], completing psychoeducation [42], and their understanding of their treatment needs, to the best of our knowledge, no study has investigated their perceptions of the quality of care they receive. Knowing more about this population's experiences can aid in defining patientcentered quality care for this group. Disclaimers VA Health Services Research and Development (IIR-067-11-2; Dr. MJ Pugh PI) funded this study. Dr. Finley is an investigator with the Implementation Research Institute (IRI) at the George Warren Brown School of Social Work, Washington University in St. Louis, through an award from the National Institute of Mental Health (R25 MH080916-01A2) and the Department of Veterans Affairs, Health Services Research & Development Service, Quality Enhancement Research Initiative (QUERI). The content of this article is solely the responsibility of the authors and does not necessarily reflect the official views of the Veterans' Health Administration. The funding organizations had no role in the design and conduct of the study; the collection, management, analysis, and interpretation of the data; or the preparation, review, or approval of the manuscript. The opinions or assertions contained herein are the private views of the authors and are not to be construed as official or as reflecting the views of the Department of the Army or the Department of Defense. Acknowledgments Elise Boucher provided research and editorial assistance. Conflicts of interest and source of funding The authors have no conflicts of interest to report. References [1] LaFrance Jr WC, Bjørnæs H. In: Schachter S, LaFrance W, editors. Gates and Rowan's nonepileptic seizures. 3rd Ed. New York: Cambridge University Press; 2010. p. 266–80. [2] Kerr MP, Mensah S, Besag F, de Toffol B, Ettinger A, Kanemoto K, et al. International consensus clinical practice statements for the treatment of neuropsychiatric conditions associated with epilepsy. Epilepsia 2011;52:2133–8. [3] Salinsky M, Spencer D, Boudreau E, Ferguson F. Psychogenic nonepileptic seizures in US veterans. Neurology 2011;77:945–50. [4] Lafrance Jr WC, Baker GA, Duncan R, Goldstein LH, Reuber M. Minimum requirements for the diagnosis of psychogenic nonepileptic seizures: a staged approach: a report from the International League Against Epilepsy Nonepileptic Seizures Task Force. Epilepsia 2013;54:2005–18. [5] Jones SG, TJ OB, Adams SJ, Mocellin R, Kilpatrick CJ, Yerra R, et al. Clinical characteristics and outcome in patients with psychogenic nonepileptic seizures. Psychosom Med 2010;72:487–97. [6] Reuber M, House AO. Treating patients with psychogenic non-epileptic seizures. Curr Opin Neurol 2002;15:207–11. [7] Kanner AM. Psychogenic nonepileptic seizures are bad for your health. Epilepsy Curr 2003;3:181. [8] Szaflarski J, Szaflarski M, Hughes C, Ficker D, Cahill W, Privitera M. Psychopathology and quality of life: psychogenic non-epileptic seizures versus epilepsy. Med Sci Monit 2003;9:CR113. [9] McKenzie P, Oto M, Russell A, Pelosi A, Duncan R. Early outcomes and predictors in 260 patients with psychogenic nonepileptic attacks. Neurology 2010;74:64–9. [10] Ahmedani BK, Osborne J, Nerenz DR, Haque S, Pietrantoni L, Mahone D, et al. Diagnosis, costs, and utilization for psychogenic non-epileptic seizures in a US health care setting. Psychosomatics 2013;54:28–34.
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[11] LaFrance Jr WC, Reuber M, Goldstein LH. Management of psychogenic nonepileptic seizures. Epilepsia 2013;54(Suppl. 1):53–67. [12] LaFrance Jr WC, Devinsky O. Treatment of nonepileptic seizures. Epilepsy Behav 2002;3:19–23. [13] LaFrance Jr WC, Rusch MD, Machan JT. What is “treatment as usual” for nonepileptic seizures? Epilepsy Behav 2008;12:388–94. [14] Martlew J, Pulman J, Marson A. Psychological and behavioural treatments for nonepileptic attack disorder. Cochrane Database Syst Rev 2014;2014. [15] Bass C, Peveler R, House A. Somatoform disorders: severe psychiatric illnesses neglected by psychiatrists. Br J Psychiatry 2001;179:11–4. [16] LaFrance Jr WC. Psychogenic nonepileptic seizures. Curr Opin Neurol 2008;21:195–201. [17] Brown RJ, Syed TU, Benbadis S, LaFrance Jr WC, Reuber M. Psychogenic nonepileptic seizures. Epilepsy Behav 2011;22:85–93. [18] Shneker BF, Elliott JO. 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Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Providers' perspectives on treating psychogenic nonepileptic seizures: Frustration and hope Katharine K. McMillan a,⁎, Mary Jo Pugh b, Hamada Hamid c, Martin Salinsky d, Jacqueline Pugh a,e, Polly H. Noël a, Erin P. Finley a,h, Luci K. Leykum a, Holly J. Lanham f, W. Curt LaFrance Jr. g a
South Texas Veterans Health Care System, San Antonio, Texas University of Texas Health Science Center at San Antonio, San Antonio, TX, USA South Texas Veterans Health Care System and VA Epilepsy Centers of Excellence, San Antonio, TX University of Texas Health Science Center at San Antonio, San Antonio, TX, USA VA Connecticut Healthcare System and VA Epilepsy Centers of Excellence, USA Yale University, New Haven, CT, USA d Portland Veterans Affairs Medical Center and VA Epilepsy Centers of Excellence, Portland, Oregon Health & Sciences University, Portland, OR, USA e South Texas Veterans Health Care System, San Antonio, TX, USA f McCombs School of Business, University of Texas, Austin, TX USA g Providence Veterans Affairs Medical Center and Neuropsychiatry and Behavioral Neurology Division, Rhode Island Hospital, Brown University, Alpert Medical School, Providence, RI, USA h Department of Medicine, and Department of Psychiatry, UT Health Science Center at San Antonio, San Antonio, TX USA b c
a r t i c l e
i n f o
Article history: Received 5 May 2014 Revised 30 June 2014 Accepted 1 July 2014 Available online 13 August 2014 Keywords: Nonepileptic seizures Diagnosis Treatment Veterans Practitioners Cognitive behavioral therapy
a b s t r a c t Recent diagnostic and treatment advances in psychogenic nonepileptic seizures (PNES) have the potential to improve care for patients, but little is known about the current state of PNES care delivery in the Veterans Health Administration (VA). We conducted semistructured interviews with 74 health-care clinicians and workers in the VA, eliciting provider perceptions of PNES care. Data were analyzed according to principles of Grounded Theory. The results revealed variation in care and two emergent domain themes of frustration and hope. Frustration was manifest in subthemes including Complexity, Patient Acceptance, Uncertainty About Treatment, Need for Evidence-based Treatment, and Failure of Cross-Disciplinary Collaboration between neurologists and mental health providers. Hope encompassed subthemes of Positive Attitudes, Developing Cross-Disciplinary Treatment, and Specific PNES Care. Increased resources for diagnosing, treating, and researching PNES have improved awareness of the disorder. More research is needed to understand patients' and caregivers' perceptions of PNES care. © 2014 Elsevier Inc. All rights reserved.
1. Introduction The past decade has seen growth in developing treatments for patients with psychogenic nonepileptic seizures (PNES), classified as a somatoform disorder that resembles epileptic seizures but is not caused by paroxysmal neuronal discharges or other electrographic physiologic abnormalities [1]. The International League Against Epilepsy has identified this condition as a major neuropsychiatric aspect of patients with seizures [2]. Psychogenic nonepileptic seizures are one of the most common disorders diagnosed in epilepsy monitoring units (EMUs) [3], due, in part, to wider availability of video-electroencephalography (VEEG) [4], and account for 25% of EMU discharge diagnoses from civilian and Veterans Health Administration (VA) settings [3]. Proper diagnosis is often delayed [5,6], and patients misdiagnosed with epilepsy risk iatrogenic harm from long-term antiepileptic drug (AED) therapy [7],
⁎ Corresponding author at: University of Texas Health Science Center at San Antonio, Department of Epidemiology & Biostatistics, MSC 7933, San Antonio, TX 78229-4404, USA. Tel.: +1 210 410 4632 (preferred), Tel.: +1 210 617 5300x17355; fax: + 1 210 617 5344. E-mail addresses: [email protected], [email protected] (K.K. McMillan).
http://dx.doi.org/10.1016/j.yebeh.2014.07.001 1525-5050/© 2014 Elsevier Inc. All rights reserved.
experience poor health-related quality of life [8], endure significant disability [9], and incur high medical care costs [3,10]. Once the diagnosis is made, the question for providers and patients becomes, “What do we do next?” Data on optimal treatment strategies remain unclear, and most neurologists prefer psychological therapy such as cognitive behavioral therapy (CBT) [2,11–13], but in the absence of fully-powered randomized controlled trials of treatment strategies, a Cochrane systematic review found insufficient evidence to recommend CBT or any other treatment [14]. Many mental health professionals remain untrained in treating somatoform disorders [15], and, consequently, patients with PNES may find themselves on the border between neurology and psychiatry, with neither neurologists nor psychiatrists fully responsible for treating the condition [16,17]. Despite diagnostic and treatment advances and greater attention paid to this condition, many patients remain untreated. As part of a larger study examining the impact of the VA's Epilepsy Centers of Excellence (ECOE), a nationwide referral system of tertiary epilepsy care centers conceptually similar to academic centers of excellence implemented in 2010, we explored health-care professionals' perceptions of care for patients with seizure disorders. In theory, the ECOE model of care represents an important opportunity to improve
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PNES care by providing resources and referral pathways that were not equally available before its implementation within the VA and are generally not available outside of integrated health systems. We examined VA epilepsy care team members' perceptions of PNES care within the backdrop of ECOE implementation. Although several surveys of physicians' attitudes and treatment practices have been published [13,18, 19], to our knowledge, no comprehensive qualitative study of PNES care in the VA or other integrated health-care systems has been published. The aims of this study were to describe providers' perceptions of PNES care and to explore the impact of the ECOE on PNES care. 2. Methods 2.1. Study design, setting, and protocol We used semistructured interviews to gain insight into the experiences of epilepsy health-care team members. The semistructured format is widely used in public health research [20] and is valuable when little is known about the phenomena under investigation [20, 21]. We contacted over 750 physicians and neurology clinical personnel through email (e.g., epileptologists and nurse practitioners) and interviewed 79 individuals by telephone from February to May 2013. All respondents verbally consented to have their interviews recorded, and none refused the interview. A social cognitive psychologist (KM) conducted the majority of interviews. Along with ten other questions related to general epilepsy care, two questions specific to PNES care were given to respondents: “After monitoring, patients are often identified as having nonepileptic events/psychogenic nonepileptic seizures. Can you describe the follow-up care of those patients?” and “How satisfied are you with the current treatment of these patients?” We collected data from each of the 16 ECOE hubs and 33 spoke facilities that refer patients for specialty epilepsy care either to an ECOE or to a university affiliate. Spoke facilities were selected from a list of 70 consortium sites with a formal relationship to an ECOE and from a list of VA neurologists and physicians employed by the VA nationally. Interviews ranged from 5 to 60 min and averaged 15–20 min with the portion of the interview pertaining to PNES averaging about 3 to 5 min. Details of the methodology are reported elsewhere [22]. The VA Central Institutional Review Board approved this study. 2.2. Qualitative analysis Interviews were recorded digitally, uploaded to NVivo qualitative data analysis software (QSR International Pty Ltd. Version 10, 2012), and transcribed in NVivo. We used an analytical approach derived from Grounded Theory [21]. Initial analysis began with broad coding of all transcribed text related to PNES (KM). The research team (MJ, JP, EF, PN, HL, and LL), which represented a multidisciplinary group with expertise in qualitative methodology, read the text-coded content line by line. The research team generated codes (free nodes) to capture themes that frequently recurred in interviews, such as ‘delay to treatment’ and ‘lack of specific PNES care’, and met repeatedly to review and refine the coding schema. Two researchers (KM and MP) organized the free codes (‘delay to treatment’) into tree nodes (parent–child nodes) such as ‘Barriers Specific to PNES Care.’ Texts were coded according to this scheme. A board-certified neurologist/psychiatrist (HH), blinded to the identities of the participants, details of the interviews, and coding schema, conducted independent analysis of the textual data. After coding those portions of transcripts relevant to PNES care, HH discussed emergent themes and subthemes with members of the research team in reiterative coding sessions. HH also provided insight into the perspectives of clinicians and the dynamics of the ECOE and VA system. Feedback from all team members was integrated into a single final coding schema, which was applied across the set of transcripts and reviewed in iterative sessions by the team for consistency and
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accuracy. All discrepancies in coding were discussed until consensus was achieved. 3. Results Five of the 79 interviews were excluded from analysis for lack of reference to PNES. Table 1 shows participants' roles. The majority were neurologists (67%). More than half of the participants (57%) were employed at ECOEs and the remainder were employed at spoke facilities that referred patients to the ECOE (38%) or affiliated university hospital for tertiary epilepsy care services (5%). Fig. 1 displays a word cloud depicting words scaled in size to frequency and colocation. Data analysis indicated substantial variation in care provided to patients with PNES that included varying approaches to management of the patient's care and differing patterns of referral. Some neurologists preferred to retain the patient in the neurology clinic, while many provided a limited number of follow-up sessions “to ease the patient into mental health services,” and some discharged the patient to primary care after one follow-up session. Some clinicians referred patients to behavioral health for therapy, psychiatry for pharmacological intervention and/or therapy, and CBT for PNES care where available. We identified two major themes—frustration and hope—and have selected statements to illustrate these themes. Statements have been edited to maintain confidentiality and enhance clarity. 3.1. Frustration theme 1: Disorder-related Clinicians perceived the condition as challenging to diagnose and treat (Table 2). In the subtheme Diagnosis, clinicians discussed the problem of nondiagnostic VEEGs (no events are captured) as up to 40% of VEEG sessions can be nondiagnositic. Lack of certainty left some clinicians hedging their bets and continuing to prescribe antiepileptic drugs (AEDs). The subtheme Complexity captures the notion that the disorder “comes in many forms” for which “there is no cookbook solution.” Psychogenic nonepileptic seizures have many links to posttraumatic stress disorder (PTSD), traumatic brain injury (TBI), emotional trauma, abuse, sexual abuse, and military sexual abuse. These “layers and layers of issues” and heterogeneity of the disorder contribute to the complexity of treatment. The subtheme Stigma, which Veterans often labor under, is associated with epilepsy and mental illness. Veterans decline mental health services for fear of being labeled as “crazy.” Clinicians recognized that their own negative attitudes contribute to stigma particularly when they held suspicions about patients whose symptoms seemed “too convenient” and who might be “faking it.” 3.2. Frustration theme 2: Provider Attitudes Respondents expressed frustrations in the subtheme Attitudes About Challenging Patients (Table 2) as some patients were described as “difficult to treat”, “tough”, “beyond help”, and “hopeless” because “they have been doing this for so long.” The subtheme Patient
Table 1 Respondents' roles at VA medical centers. Role
ECOE
Spoke
Total N (%)
Neurologist/epileptologist Nurse practitioner/nurse EEG technologist Other roles Total
23 10 5 5 43
25 3 1 2 31
48 (65%) 13 (18%) 6 (8%) 7 (10%) 74 (100%)
Key: ECOE, Veterans Administration Epilepsy Centers of Excellence; N, number; “Other roles” includes primary care physicians, neuropsychologists, and neurointerventional radiologists.
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care” with a limited number of follow-up visits, but some clinicians retained their patients to safeguard them from potential iatrogenic harm, reduce health-care service usage, and provide emotional support. Some clinicians felt that caring for these patients was a “good use of my time” and took patients' concerns “seriously.” Many respondents did their best to educate the patient to help them reduce their anxiety so that “the patient is not going, ‘OMG’, every time he has a seizure.” In the subtheme Patient in Limbo, respondents noted that patients were not always welcomed in neurology or mental health clinics—“nobody wants to deal with them.” Patients did not feel “comfortable” in mental health care and were not able to receive the care they needed in neurology. In the subtheme Need for Evidence-based Treatment, respondents noted that there was “not enough scientific research showing there is a treatment with benefits.” About half of those interviewed expressed some level of dissatisfaction with current treatment, largely for the lack of targeted, demonstrably effective treatment available at their facility. Moreover, respondents believed that the VA needed “a more uniform set of guidelines to treat PNES.” 3.4. Frustration theme 4: The VA System
Fig. 1. Word cloud depicting terms describing PNES care. High-frequency words denoted by heavy size/weight of font; arrangement of words indicates their colocation in the texts.
Acceptance was seen as an issue because patients sometimes rejected the diagnosis, found the diagnosis confusing, and had difficulty understanding its relationship to mental health. In the subtheme Primary/Secondary Gain, several respondents indicated that patients may be “gaming the system” for disability compensation and suggested that patients sometimes decline VEEG or are “no shows” because they fear that a diagnosis would incur a loss of benefits. As noted by one respondent, “Everything that occurs in the VA occurs against the backdrop of disability", and patients may have “little motivation to engage in their care,” a view that was echoed by several respondents. 3.3. Frustration theme 3: Treatment of PNES Providers expressed frustration in the subtheme Uncertainty About Treatment (Table 3). Some respondents believed that most mental health practitioners were “not interested” and that there are “few good options” in treating somatoform disorders. Because many respondents eventually discharged their patients to primary care, few were aware of how well (or poorly) the patient fared. Respondents revealed varying views in who should be responsible for the patient in the subtheme Managing the Patient in Neurology. Nearly half of the neurologists “eased the patient into mental health
In the subtheme VA Disability Issues, Veterans with disability status may be unwilling to undergo long-term monitoring out of fear of losing their service connection benefits. Some respondents believed that VA should more clearly articulate the disability status of PNES in order to address the problem of delayed diagnosis. In the subtheme Hub and Spoke and Continuity of Care Issues, the most salient issue for spoke facilities is the lack of resources available for treatment of this condition that are sometimes available at an ECOE. Patients diagnosed at an ECOE but returned to their home facility might be lost to care because of the lack of availability of specialized PNES care at their spoke facility. About one-fifth of the respondents expressed concern that some mental health providers “undercut” the neurologist's diagnosis by telling patients “maybe your seizures are real” and re-referring the patient to neurology in the subtheme Failure of Cross-Disciplinary Collaboration. About half of the respondents expressed the need for collaboration between the neurologist and mental health provider to facilitate treatment and prevent the mental health provider from “being intimidated” by the patient. The subtheme Referral Issues can sometimes result in misdirected or rejected referrals. There was some concern that changing to an ECOE model of care could increase these challenges. Some clinicians expressed concern that the “university option” (i.e., referring patients to a university affiliate for VEEG) would be eliminated and that they would be “forced” to refer patients to an ECOE that was several hundred miles away and “too inconvenient” for patients. Respondents found the referring to be a straightforward process, but obstacles included unavailability of an observer (such as a family member) and rural Veterans' dislike of urban settings (where many ECOEs are based).
Table 2 Frustration domain: themes, subthemes, and selected statements. Themes
Subthemes
Statements
3.1 Disorder-related
Diagnosis
They do not have any spells when they are up there [in the EMU]. I am stuck with ‘Are they real or are they not real?’ Nobody else can tell me if the spells are real or not real. I do not know what else to do with them. That is a big area of frustration. [#35 Neurologist] It is just layer after layer of issues: migraine headaches, sexual abuse, seizures, and trauma. [#19 Pharmacist] I think the stigma of nonepileptic seizures is that ‘oh, I am faking it.’ I discourage that with patients. The problem is a psychiatric issue. [#1 Nurse Practitioner] I sit down and discuss it with them. Some of them are in treatment and some of them are—I hate to say this—beyond help. I mean, they have been doing it for so many years. [#18 Neurologist] The truth? I do not think the patients are too happy. They were expecting something else. “So OK. I do not have seizures. I am let down. I am going to go see a shrink. I don't understand that.” [#65 Nurse Practitioner] That is the other part: the secondary gain. This person is 100% service connected and receives $3000 a month but if we find out he does not have epilepsy, then he is afraid he will lose all his benefits. [#18 Neurologist]
Complexity Stigma 3.2 Provider Attitudes
Attitudes About Challenging Patients Patient Acceptance Primary/Secondary Gain
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Table 3 Frustration domain: themes, subthemes, and selected statements. Themes
Subthemes
3.3 Treatment Uncertainty About Treatment of PNES Managing the Patient in Neurology Patient in Limbo Need for Evidence-based Treatment 3.4 The VA VA Disability Issues System Hub and Spoke and Continuity of Care Issues Failure of Cross-Disciplinary Collaboration Referral Issues
Statements Well, it is difficult because nobody really knows how to treat them. I would say it is an area of frustration. [#48 Neurologist] We sometimes lose these people …. Sometimes they feel neglected. We have some problems getting the communications across. In ideal circumstances, I would manage patients with PNES on some regular interval. [#11 Neurologist] These people take years to deal with. They are not easy fixes. Nobody wants to deal with them. [#35 Neurologist] Many of the mental health people are not sure how to treat nonepileptic seizures. They do not have the treatment training for it. [#21 Nurse Practitioner] I have someone who is 100% service connected for seizures. We are setting him up to go to the ECOE. He said, “I don't want to go to ECOE because what if they find out I don't have epilepsy? I lose all my benefits.” [#18 Neurologist] Part of the problem is that patients are not necessarily from here [ECOE]. For their long-term care, it may be hard for them to come here for frequent and intensive care. It is not really a formalized system so it is definitely a big gap. [#74 Epileptologist] One of the biggest problems in neurology is that we will refer the patient to psychiatry and then the psychiatrist says to the patient, “You may have real seizures.” They send them back. It totally undercuts whatever we do. [#25 Epileptologist] My consults have been rejected, pushed to the side or referred to some other service like memory service, geriatrics, or memory clinic. We do not really have a good way of addressing this patient. We are basically left in limbo. [#34 Neurologist]
the issue of nondiagnositic EMU sessions on a case-by-case basis to clarify treatment of difficult-to-classify patients.
3.5. Hope theme 1: Positive Attitudes Many respondents conveyed hope of improving attitudes toward the patient and disorder (Table 4). In the subtheme Patient, some clinicians believed “these Veterans still require the same respect, understanding, and empathy that Veterans with any other type of illness require.” Many practitioners noted the necessity of validating the patient's feelings and made efforts to ensure that patients felt supported. Respondents emphasized that they stress the possibility of good outcomes to give the patient “a sense of control.” Moreover, respondents expressed positive feelings about caring for these patients. About half of the respondents expressed qualified satisfaction with the treatment offered to patients in the subtheme Treatment. Respondents perceived care as “comparable with and sometimes better than civilian care.” Some respondents stated that the VA's integrated health system enabled referrals to mental health and increased access to mental health providers with competency in trauma-related care. Some noted that the “EMU culture” created by EEG technicians had a “normalizing” effect for patients with PNES and that the “most effective treatment” was communicating the diagnosis to the patient while in the EMU. In the subtheme Disorder, respondents noted that the condition is “taken seriously” and “has a little more respect” than in the past due to increased awareness. Psychogenic nonepileptic seizure research, clinical interest, and expertise in monitoring are “the greatest achievements of the ECOE.” Because the disorder is taken seriously, patients are realizing that “they are not crazy” and “not faking it.” Some clinicians expressed hope that the ECOE could provide additional guidance on
3.6. Hope theme 2: Cross-Disciplinary Treatment In the subtheme Developing a Cross-Disciplinary Team, about onefourth of the facilities represented in our study were developing crossdisciplinary teams composed of a neurologist and mental health care provider (Table 4). One VA medical center was establishing a neurobiology program that encompassed professionals from neurology and psychiatry, neuropsychology, and behavioral health to treat somatoform disorders. Other facilities had programs to rotate psychiatry residents in the neurology department to promote awareness of the disorder. In the subtheme Wish Lists, some respondents expressed a desire to develop a multidisciplinary team similar to epilepsy care teams composed of an epileptologist or neurologist, psychiatrist, psychologist, and/or social worker. Clinicians also discussed having a psychologist who would be part of the neurology department to care for patients. 3.7. Hope theme 3: Specific PNES Care Some respondents believed that patients would have better outcomes if mental health providers had training in treatment for the condition (Table 4). The subtheme Neurology-based Psychoeducation helps patients understand their condition and increases the likelihood of them engaging in psychotherapy. One facility developed and tested structured, manualized group meetings that focused on achieving short-term goals such as anxiety reduction, reducing hospital/ED
Table 4 Hope domain: themes, subthemes, and selected statements. Themes
Subthemes
Statements
3.5 Positive Attitudes
Patient
Some of my most delightful patients are psychogenic nonepileptic seizure patients. I am eager to see them when they come back. It is sometimes easier than dealing with some other disorders that are often disabling. [#7 Epileptologist] The most effective “treatment” for PNES is making a diagnosis of PNES. [#76 Epileptologist] I think the Veterans are realizing “I am not crazy. They don't think I am faking this.” I think there is a little more respect for the diagnosis. That is the major change I have seen. [#57 Nurse Practitioner] We are building a conjoined behavioral neurology and epilepsy program. We have a little bit of a voice when it comes to neuropsychologists and psychiatrists. [#11 Neurologist] We have often talked about ‘Wouldn't it be nice if we had a psychologist that we paid part of his/her salary?’ Or, even if we hired somebody who had an interest in conversion disorders who we could send all the patients to? [#52 Nurse Practitioner] There is a lot of work that needs to be done [for these patients]. I would like to have more involvement in the psychoeducation process for PNES. [#61 Neuropsychologist] I think that we can offer them better options and streamline things better for them. What actually helps in terms of their care is that our pharmacy is integrated, that their mental health is integrated, and that their medical records are integrated. [#40 Epileptologist] I think PNES care is going to be in telehealth. Only a few people are actually interested in treating it, and the next thing for the VA to do is set up CBT telehealth. We are able to share resources across state lines to provide telehealth for patients with psychogenic seizures. [#66 Neurologist/Psychiatrist]
Treatment Disorder 3.6 Cross-Disciplinary Treatment
Developing a CrossDisciplinary Team Wish Lists
3.7 Specific PNES Care
Neurology-based Psychoeducation System
CBT and Tele-NES
Key: CBT, cognitive behavioral therapy.
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usage, and improving social and work functioning. About a quarter of ECOEs and spokes reported having a psychologist, neuropsychologist, or counselor on staff within the neurology clinic to treat patients with PNES. In the subtheme System, some respondents with university affiliation viewed the VA as having some advantages in treating PNES. The integration of mental health, pharmacy, and other services along with the patient's medical records was perceived as helpful in managing the patient's health. Mental health providers could potentially communicate more effectively with neurologists and others as well as access information about the patient. Many clinicians advocated the VA putting more resources into addressing PNES because doing so would reduce health-care utilization/costs and improve outcomes for patients. Cognitive behavioral therapy-informed psychotherapy for PNES was the therapy of choice. The ECOE has launched a PNES-specific CBT training program and telehealth (eHat) program. Respondents noted that a relatively small number of CBT-trained telehealth providers could treat patients nationwide and that home-based telehealth (homebased via computer over secure VA-provided internet) could provide care for the “sickest patients.” Telehealth clinics based in other facilities were also seen as an option. Implementation of CBT telehealth was seen as feasible, and respondents felt that veterans in rural areas would be especially well served by these telehealth options.
4. Discussion In this study, we systematically assessed provider perceptions of care of patients with PNES and identified key themes. These themes are important in that they reflect the current problems in diagnosis and treatment, as well as attitudes that may shape provider behavior and treatment decisions. While many of these themes reported herein likely resonate among clinicians treating for patients with PNES, few, if any studies, have directly investigated clinicians' experiences of caring for this patient population. We are not aware of any previous research that has attempted to compile and articulate these themes, identifying areas that are of greatest concern. Recent diagnostic and treatment advances move this “orphan disorder without a home” to a shared-care model with a mind/brain perspective in neurology and psychiatry collaboration. The shared-care model pioneered in the ECOE represents an important opportunity for improvement in PNES care [23]. Cross-disciplinary care reduces the risk that mental health providers may reject the diagnosis even when it has been confirmed by VEEG [24] or fail to understand its devastating impact on the patient [15,23]. Lack of collaboration has been linked to high neurology readmission and continuation of AEDs in over 40% of patients diagnosed with PNES years after diagnosis [25]. Various treatment approaches for PNES exist, and publications describing them increase each year [11]. Some of these approaches have been implemented in the VA System. Some initial evidence suggests that patients who receive psychoeducation had a greater potential for improved social outcomes, but seizure frequency was not significantly reduced in open-label trials [26]. The role of psychoeducation may be to help reduce the loss to follow-up as they transition to treatment [27]. Group psychoeducation may have potential for reducing seizures, dissociative/posttraumatic symptoms, and reliance on emotionbased coping strategies, as seen in an uncontrolled open-label study [28]. Fully-powered prospective randomized controlled trials are needed to assess the various approaches. One key area of hope comes from the VA's integrated health-care system. Veterans Health Administration patients are more likely to have access to mental health care than those in nonintegrated systems because the VA's integrated system facilitates referral to mental health, streamlining the process through electronic medical records. In the private sector, there are more challenges to referral, communication, and coordination of care. A number of neurologists who held academic
appointments and practiced in the community favorably compared VA care with care available in the community. In terms of providing effective treatment, we saw hope in the broader availability of evidence-based targeted PNES treatments. Psychotherapy has been shown to decrease seizure frequency of by up 70% in retrospective reports [29,30]. A recent Cochrane review noted that only one randomized control trial (RCT) investigating the effectiveness of CBT in this patient group demonstrated a significant reduction in seizure frequency compared with controls (P b 0.001) [31]. Since the Cochrane review publication and administration of this survey, a multisite, pilot RCT revealed significant reduction of PNES frequency and improvement in depression, anxiety, PTSD symptoms, quality of life, and functioning in patients treated with a psychotherapy treatment workbook for seizures [32]. In contrast, patients treated with standard medical care, or treatment as usual, showed no improvement in seizures, comorbid symptoms, or functioning. This workbook is now in use in the VA for treating Veterans in ECOE clinics and via telehealth program of the VA National Telemental Health Center [33]. Another area of hope is in the potential for reducing delay to correct diagnosis. One key role of the ECOE is to provide VEEG services for Veterans referred from facilities lacking this service. Reducing delay in diagnosis and treatment of PNES is critical from both the patient and provider perspectives. Undiagnosed PNES in Veterans with “the right history” (e.g., TBI and deployment) has the potential to lead to iatrogenic harm from escalating dosages of AEDs or heroic treatment to stop nonepileptic status [7]. Correct diagnosis has been shown to lessen or eliminate seizures in significant numbers of patients, reduces emergency department visits by up to 50% [34], diminishes all types of healthcare utilization [35], and reduces the average number of visits and inpatient stays [10]. Despite limitations in the VA system, the ECOE is perceived as responding to gaps in care and increasing awareness of PNES, and potentially provides insights for PNES care in other integrated systems. The ECOE provides information to clinicians in the VA including emergency department and primary care physicians who play important roles in patient care but may miss potential cases of PN because of misinformation about the condition. By educating providers, the ECOE is trying to reduce the many years patients can spend with the misdiagnosis of epilepsy. The delay in diagnosis is up to five times longer for Veterans than for the civilian sector likely because of stereotypes that PNES affects largely, women, and about 85% of Veterans presenting with psychogenic seizures are male [3,36–38]. Our study was the first large scale qualitative study of providers' perspectives in a national, integrated health-care system. These results have been obtained in the setting of the VA health-care system and patient population which differ significantly from civilians. However, the clinician themes identified by this research largely represent general concerns regarding the diagnosis and treatment of PNES rather than specific issues regarding the VA and Veterans. Our study had several limitations. We did not randomly sample participants, and those who self-selected to participate may have a bias and may not be representative of all epilepsy care providers in the VA. We also did not interview mental health providers in the VA system, and that would have expanded our knowledge about PNES treatment and coordination of care. Moreover, we interviewed a representative sample of personnel from the 16 ECOE sites and referral sites in the VA system. Although many participants provided care in community and academic affiliate settings, we did not survey or compare non-VA providers, who may have access to or knowledge of other PNES resources. Lastly, the majority of interviews were conducted by one individual using a semistructured interview format that allowed for relevant probes and follow-up questions to be asked. This may have introduced an element of bias in that leading questions may have been asked. Lastly, we did not interview patients with PNES or their caregivers for this study whose experiences of care, particularly of the more advanced ECOE offerings of CBT-inspired psychotherapy for PNES, would have been illuminating.
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With these limitations in mind, the results represent a starting point in identifying areas of common concern among clinicians caring for patients with PNES. Future research should explore patients' and caregivers' perceptions of quality of care. Of importance, very little is known about patients' perspectives on the quality of care they receive in the VA or other health-care settings. While several qualitative studies have examined patients' experiences of receiving the diagnosis of PNES [39–41], completing psychoeducation [42], and their understanding of their treatment needs, to the best of our knowledge, no study has investigated their perceptions of the quality of care they receive. Knowing more about this population's experiences can aid in defining patientcentered quality care for this group. Disclaimers VA Health Services Research and Development (IIR-067-11-2; Dr. MJ Pugh PI) funded this study. Dr. Finley is an investigator with the Implementation Research Institute (IRI) at the George Warren Brown School of Social Work, Washington University in St. Louis, through an award from the National Institute of Mental Health (R25 MH080916-01A2) and the Department of Veterans Affairs, Health Services Research & Development Service, Quality Enhancement Research Initiative (QUERI). The content of this article is solely the responsibility of the authors and does not necessarily reflect the official views of the Veterans' Health Administration. The funding organizations had no role in the design and conduct of the study; the collection, management, analysis, and interpretation of the data; or the preparation, review, or approval of the manuscript. The opinions or assertions contained herein are the private views of the authors and are not to be construed as official or as reflecting the views of the Department of the Army or the Department of Defense. Acknowledgments Elise Boucher provided research and editorial assistance. Conflicts of interest and source of funding The authors have no conflicts of interest to report. References [1] LaFrance Jr WC, Bjørnæs H. In: Schachter S, LaFrance W, editors. Gates and Rowan's nonepileptic seizures. 3rd Ed. New York: Cambridge University Press; 2010. p. 266–80. [2] Kerr MP, Mensah S, Besag F, de Toffol B, Ettinger A, Kanemoto K, et al. International consensus clinical practice statements for the treatment of neuropsychiatric conditions associated with epilepsy. Epilepsia 2011;52:2133–8. [3] Salinsky M, Spencer D, Boudreau E, Ferguson F. Psychogenic nonepileptic seizures in US veterans. Neurology 2011;77:945–50. [4] Lafrance Jr WC, Baker GA, Duncan R, Goldstein LH, Reuber M. Minimum requirements for the diagnosis of psychogenic nonepileptic seizures: a staged approach: a report from the International League Against Epilepsy Nonepileptic Seizures Task Force. Epilepsia 2013;54:2005–18. [5] Jones SG, TJ OB, Adams SJ, Mocellin R, Kilpatrick CJ, Yerra R, et al. Clinical characteristics and outcome in patients with psychogenic nonepileptic seizures. Psychosom Med 2010;72:487–97. [6] Reuber M, House AO. Treating patients with psychogenic non-epileptic seizures. Curr Opin Neurol 2002;15:207–11. [7] Kanner AM. Psychogenic nonepileptic seizures are bad for your health. Epilepsy Curr 2003;3:181. [8] Szaflarski J, Szaflarski M, Hughes C, Ficker D, Cahill W, Privitera M. Psychopathology and quality of life: psychogenic non-epileptic seizures versus epilepsy. Med Sci Monit 2003;9:CR113. [9] McKenzie P, Oto M, Russell A, Pelosi A, Duncan R. Early outcomes and predictors in 260 patients with psychogenic nonepileptic attacks. Neurology 2010;74:64–9. [10] Ahmedani BK, Osborne J, Nerenz DR, Haque S, Pietrantoni L, Mahone D, et al. Diagnosis, costs, and utilization for psychogenic non-epileptic seizures in a US health care setting. Psychosomatics 2013;54:28–34.
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