Psychogenic Non-Epileptic Seizures (PNES): Clinical Outcomes & Diagnostic Amnesia Glosser, DS; Caris, E; Took, L; Tracy, J; Nei, M; Skidmore, C; Mintzer, S; Zangaladze, A; Sperling, M ABSTRACT (1.305) Psychogenic Non-Epileptic Seizures (PNES): Clinical Outcomes & Diagnostic Amnesia RATIONALE: PNESs are common, heterogeneous, and entail great morbidity & expense. Though assessment and treatment have become more sophisticated, PNES patients may not welcome the diagnosis. We prospectively compared epilepsy vs. PNES patient outcomes and characteristics; studying seizure frequency, healthcare utilization, employment, consumer satisfaction, QOL, memory of diagnosis and agreement with it. METHODS: Sixty eight sequential intensive monitoring admits to the Jefferson Epilepsy Care Unit were enrolled, under IRB approval. Thirty had discharge diagnosis of PNES and 32 with epilepsy. Four S’s could not be diagnosed & were excluded; as were 2 S’s with PNES + epilepsy. Follow-up failed with 2 Epilepsy S’s & 4 PNES S’s. Final groups were equivalent for gender, age, IQ, and consisted of 25 PNES (7 male) and 26 Epilepsy (6 male) patients. Diagnosis was by history, exam, imaging, & video-EEG of typical sz’s and inter-ictal recording. All S’s underwent neuropsych tests, the “PNES Risk Factor Structured Interview”, and a QOL survey. All patients were given detailed verbal explanations of diagnosis prior to discharge by their attending neurologist. Follow-up structured interview was at mean post-discharge month 11.7 (Epilepsy) and 9.8 (PNES). RESULTS: Pre-diagnosis, PNES S’s had more seizures in the past 30 days than Epilepsy S’s; 34 seizures vs. 8 seizures, (p=.001). At follow-up, 30 day seizure frequency was PNES =12 vs. Epilepsy =5 (p=0.39). At follow-up, 30 day PNES seizure freq. declined from 34 to 11 (p=.08). Pre-diagnosis ER admits in past year; PNES=4.9, Epilepsy=2.4 (p=0.06). At follow-up; 40% of PNES S’s vs. 19% of Epilepsy S’s had >1 ER admission. PNES S’s consulted a significantly (p<.001) greater number of different doctors both pre-diagnosis (8 vs. 5) and post-diagnosis (2.2 vs. 0.6) than Epilepsy S’s. The number of anti-epileptic drugs was higher for Epilepsy S’s both pre-diagnosis (1.8 vs. 1.2) and at follow-up (1.5 vs. 0.4, p<.01). Post diagnosis PNES anti-epileptic drug use declined (p<.001). At follow- up, 88.5% of Epilepsy S’s vs. 64% of PNES S’s correctly reported the discharge diagnosis. 100% of the Epilepsy S’s vs. 44% of the PNES S’s believed their diagnosis to be correct. PNES “believers” saw fewer additional doctors by follow-up than “non-believers” (1.27 vs. 3.18, p=.021). Duration of pre- diagnosis illness did not predict “belief” in diagnostic accuracy. 92% of the Epilepsy S’s vs. 56% of PNES S’s thought it useful to know the diagnosis. None of the PNES “believers” thought the attending MD and staff to have been uninterested in their care, but 27% of the “non-believers” thought so. Follow-up PNES QOL scores were lower than Epilepsy S’s scores (19.4 vs. 25.7, p=.006). PNES S’s unemployment/disability rates pre-diagnosis and at follow-up were 65% vs. 64% and insignificantly higher than Epilepsy S’s. CONCLUSION: At follow-up PNES S’s had higher rates of health care utilization and lower QOL than Epilepsy S’s, and shared their high rates of unemployment. The careful diagnosis of PNES did reduce reported seizure frequency and AED use at follow-up, but many PNES patients didn’t believe, remember, or value the diagnosis; perhaps in service of their need to preserve access to its subjective benefits. Those who believed the PNES diagnosis were more likely to feel that the medical team was interested in their care and subsequently consulted with fewer doctors. Department of Neurology, Jefferson Medical College, Philadelphia, PA, USA BACKGROUND Psychogenic non-epileptic seizures (PNES) are thought to occur in up to 30% of patients with intractable seizures and occasion substantial excess morbidity and expense. A PNES is a paroxysmal behavioral event that has been medically interpreted to be an epileptic seizure; when in fact it is not. Rather than a distinct disease, it is a diagnostic misattribution which has the social effect of relabeling a behavior as a disease. PNES may be regarded as belonging to the group of distress displays or somatization behaviors. Lipowski (1990) described somatization behavior as, “The tendency to experience and communicate somatic distress and symptoms unaccounted for by pathologic findings, to attribute them to physical illness, and to seek treatment for them”. While the propensity to emit these behaviors is probably influenced by inherent constitutional factors, it has been argued that PNES is normal behavior; insofar as it is learned, shaped, and extinguished through processes of modeling, reinforcement and extinction in the same way as other behaviors (Sirven & Glosser, 1998). What makes PNES distinctive is that once it has been relabeled as a disease, by the process of medical diagnosis, culturally determined social responses to it emerge. These may profoundly affect the seizure-like behavior as well as the beliefs about self of the behavior’s enactor; the newly minted pseudo-epilepsy patient. A medical diagnosis is a theory advanced to explain observations. Like all theoretical constructs, a diagnosis is typically maintained until confronted with convincing competing evidence that causes a paradigm shift. Admission to a video-EEG monitoring unit can provide data of sufficient strength to cause a paradigm shift in those who understand or value this kind of evidence; medical practitioners, but its effect on PNES patients’ attributions, theories about self, and behavior, are less well understood and are the subject of this study. SUBJECTS VariableES (Epilepsy)PNES____ MSDMSD Age Education I.Q Months since onset Number x GenderM=6F=20M=7 F=18 Total=25Total= 26 _________________________________________________________________________ I. QUESTIONS: Pre-admission, how do PNES & ES patients differ re: 1. Seizure frequency 2. Healthcare utilization 3. AED use ? I. ANSWERS: 1. PNES patients report more seizures than ES patients. 2. PNES patients consult with more doctors, have more ER visits, and more hospitalizations in the past year. 3. Epilepsy patients have slightly > # of AED’s. _______________________________________________________ II. QUESTIONS: At follow-up, how do PNES & ES patients differ re: 1. Memory of diagnosis 2. Belief in diagnosis 3. Usefulness of diagnosis? 4. QOL 5. Employment 6. Did PNES sz. frequency decline? II. ANSWERS: 1. 89% of ES vs. 56% of PNES patients correctly remembered discharge diagnosis % of ES vs. 44% of PNES patients agreed with diagnosis % of ES vs. 56% of PNES pt’s. said diagnosis “useful”. 4. PNES QOL scores were lower (19.4 vs of 30; p=.006). 5. PNES 65% vs. ES 64% employed at follow-up. 6. PNES sz freq. declined 32% (p=.08) 30 days pre-follow-up. III. QUESTIONS: At follow-up, did PNES diagnosis “believers” vs. “non-believers” differ re: 1. Seizure frequency 30 day pre-follow-up 2. Healthcare utilization 3. Satisfaction with medical team? III. ANSWERS: 1. PNES non-believers report more seizures. 2. PNES non-believers saw more MD’s since discharge (3.18 vs. 1.27; p=.021) % of non-believers thought the medical team to be disinterested. All of the believers were satisfied with care. DISCUSSION: Sixty one of 68 sequential admissions to the Epilepsy Care Unit were successfully followed up at an average of 9.8 months post discharge for the PNES patients and 11.7 months for the ES (epileptic seizure) patients. Through clinical exam, history, imaging, and video-EEG, a consensus diagnosis was achieved in 64 of the admissions; 30 with PNES and 32 with ES. Two subjects with both ES and PNES were excluded. All patients underwent neuropsychological testing, administration of the “PNES Risk Factor Structured Interview”, and a structured interview to determine health care utilization, employment, and estimated seizure frequency. Each subject had a discharge conference with the attending neurologist to review the EEG findings, diagnosis, and follow-up recommendations arising from the hospitalization. Enrolled subjects all consented to a follow-up telephone interview, at which time a scripted structured interview was conducted to collect data about seizure outcome, AED use, satisfaction with care, memory of discharge diagnosis, agreement with diagnosis, and interim healthcare utilization. A brief QOL. measure, “Satisfaction With Life Scale” (Deiner, et.al., 1985), was administered as well. The ES patients correctly remembered their diagnosis, agreed with it, found it useful, and regarded the medical team to be very interested in their care. At follow-up they were taking a slightly smaller number of different AEDs and regarded their QOL as being quite good despite their illness, low rates of employment, and residual seizures. Pre-diagnosis, the PNES patients had many more seizures than the ES patients, accumulated more doctors, and suffered the same low rates of employment as the ES patients. While at follow-up, the PNES patients did experience reduced seizure frequency, AED use, and rate of doctor accumulation; they still exceeded the ES patients on all of these variables, except AED use, and reported markedly lower QOL than ES patients. At follow-up, 36% of the PNES patients simply appear to have blotted out the memory of their diagnosis; or alternatively did not believe it (56%). Some professed to neither remember nor believe it. Many asserted that no one told them the diagnosis or asserted that they were told they had epilepsy. The non-believers regarded the medical team as being less interested in them, later accumulated more doctors, and felt the diagnosis to be less useful than the believers. Duration of pre-diagnosis illness did not predict belief by this sample of long term PNES patients. CONCLUSIONS: While the diagnosis of PNES did mitigate some harm and expense, it did not cause a paradigm shift among many of the PNES patients. They presumably valued aspects of their illness and reduced diagnostic dissonance by forgetting, distorting, or discrediting its source. It is hard to prove the null hypothesis or to un-diagnose a PNES patient. Prevention of hardened illness identity, by very early diagnosis and help, may be vital.