Psychogenic Nonepileptic Seizures

Delays in Diagnosis

Correct and prompt diagnosis is essential for patients with PNES as is appropriate referral to a knowledgeable trained mental health professional. On average, patients with PNES are diagnosed 7.2 years after manifestation (SD 9.3 years), with mean delay of 5 to 7 years. Younger age, interictal epileptiform potentials in the EEG, and anticonvulsant treatment are associated with longer delays [42,43]. Delays are also thought to occur because of problems with “ownership” of these patients. Although typically neurologists are involved in the diagnosis of PNES, often using video EEG monitoring done in an inpatient setting, the next step is often a referral to a psychiatrist or mental health care provider. There are sometimes delays in the initial referral to the neurologist, delays in referral to specialists for video EEG testing, and also to the physicians, psychologists or social workers who may provide treatment. Another disconnect can occur if patients are “lost to follow-up” if they receive a referral for mental health care and either do not follow up on this on their own, or if the reason for this care is not fully explained. In addition, many mental health professionals are not trained in the evaluation and treatment of psychogenic symptoms and may even feel uncomfortable in dealing with these patients [13,44].

Many studies have been suggestive that delays in diagnosis may result in poorer outcomes [45,46], while other studies have suggested that patients who have an acute diagnosis of PNES upon presentation may do particularly well [8,47–49]. Some of the most recent large outcome studies suggest that there may be no worsening of outcome associated with delays in diagnosis and that outcome was predicted by other factors [50–52].

Management

Management of patients with PNES is similar to that for patients with other types of so-called abnormal illness behavior, although there remains a relative paucity of evidence for specific treatment strategies for PNES [1]. The first consideration should be the manner in which the diagnosis of PNES is presented to the patient and family. It is important to be honest with the patient and demonstrate a positive approach to the diagnosis [53]. The physician should emphasize as favorable or good news the fact that the patient does not have epilepsy, and should also stress that the disorder, although serious and "real," does not require treatment with antiepileptic medications and that once stress or emotional issues are resolved, the patient has the potential to gain better control of these events [1,54,55]. Nevertheless, not all patients readily accept the diagnosis or this type of approach. Some patients may seek other opinions, and this should not be discouraged. An adversarial relationship with the patient should be avoided. The patient should be encouraged to return if desired, and records should be made available to other health care providers to avoid duplication of services.

After the diagnosis of PNES is presented, supportive measures should be initiated. PNES patients may benefit from education and support that can be provided by the neurologist or primary care physician [1]. If the neuropsychological assessment suggests a clinical profile that requires a professional mental health intervention, then an appropriate referral should be made. Regular follow-up visits for the patient with the neurologist are useful even if a mental health professional is involved [49,56]. This allows the patient to get medical attention without demonstrating illness behavior. Patient education and support are stressed at these visits. Because family issues are often important contributing factors, physicians should consider involving family members in visits with consent of the patient [1].