To reveal or conceal? Adult patient perspectives on SUDEP disclosure.

OBJECTIVE: The study aimed to evaluate adult patient or caregiver feelings and viewpoints about sudden unexpected death in epilepsy (SUDEP) awareness. BACKGROUND: The decision to discuss SUDEP with patients and families has created much debate. Many healthcare providers (HCPs) are hesitant to discuss SUDEP because of the perception of evoking unnecessary fear in patients while others argue that informing patients about SUDEP may enhance patient compliance, improve seizure control, and aid in saving lives. This study quantifies patient viewpoints regarding their right to information, requirements of disclosure, and initial responses of fear and patient motivation toward behavioral change. DESIGN/METHODS: This was a prospective random sample survey of adult patients with epilepsy or their caregivers. Every third eligible adult patient with epilepsy or caregiver was given a one-page SUDEP information sheet promoted by the Epilepsy Foundation of America. Participants were then asked if they were interested in completing an eight-item questionnaire assessing their perception of the information. RESULTS: Ninety-four of ninety-six subjects completed the survey (98%). One hundred percent (n = 94) of responders felt they had a right to be informed about SUDEP, and 95% felt that their HCP should be required to inform them. Respondents also indicated that SUDEP awareness motivated them for better medication adherence (89%) and management of lifestyle factors that lower seizure threshold (88%). Thirty percent endorsed increased fear. However, 100% of those patients or caregivers who endorsed fear still felt it was their right to be informed. Patients who endorsed fear were also more likely to be interested in nonpharmacologic treatment options as a result of SUDEP disclosure. CONCLUSIONS: Patients and caregivers feel it is their right to be informed about SUDEP, irrespective of evoked fear. The vast majority of participants endorsed a requirement for HCPs to disclose related information. While some participants endorsed fear, most agreed that SUDEP awareness motivated them to better manage factors that trigger seizures. Patient education regarding SUDEP may play a key role in encouraging modifying lifestyle factors that lower seizure threshold and facilitate more aggressive interventions in patients with pharmacoresistant epilepsy.

An evaluation of the impact of memory and mood on antiepileptic drug adherence.

RATIONALE: Antiepileptic drugs are the mainstay of treatment for patients with epilepsy. Adherence to the prescribed regimen is a major factor in achieving a reduced seizure burden, which can decrease morbidity and mortality. Patients with epilepsy oftentimes complain about difficulty with memory. Because little is known about the relationship between memory and mood and adherence, the purpose of this project was to determine the impact of the confounding factors of memory and mood on antiepileptic drug adherence in patients with epilepsy. METHODS: One hundred adult patients with epilepsy were recruited from the outpatient neurology clinic for this cross-sectional study. Patients who met the inclusion criteria completed measures of subjective memory (subset of 6 memory questions from the QOLIE-89) and objective memory (Hopkins Verbal Learning Test - Revised), subjective adherence (Morisky scale) and objective adherence (medication possession ratio), and mood (Neurological Disorders Depression Inventory for Epilepsy). Refill records from each patient's community pharmacy were used to objectively assess adherence. Medication possession ratios were calculated based on the antiepileptic drug refill records over the previous 6months. Patients were considered adherent if their MPR was >80%. RESULTS: Women made up the majority of the sample (n=59), and, on average, patients had been living with epilepsy for nearly 20years. Approximately 40% of the sample were on antiepileptic drug monotherapy; most patients (>70%) took their antiepileptic drugs twice daily, and the mean number of total medications was 4.25±2.98. Based on the objective measure of adherence, 35% of the patients were nonadherent. Patients self-reported better adherence than what was objectively measured. Only the retention metric of the objective memory measure differentiated adherent patients from nonadherent patients. Patients in the adherent group had significantly lower depression scores (indicating better mood) compared with those in the nonadherent group (p=0.04). CONCLUSIONS: Objective memory measures were not robustly correlated with adherence. However, we observed that patients with higher depressed mood scores were more likely to be nonadherent. By targeting patients with epilepsy and comorbid depression, practitioners may identify patients at greatest risk of nonadherence and subsequent harm.

Comparing patients' and practitioners' views on epilepsy concerns: a call to address memory concerns.

The objective was to compare practitioners' impressions of patients' concerns with those expressed by the patients themselves. Prior to clinical interaction, adult patients with epilepsy and their established practitioners were asked to choose their top five concerns via a modified version of the Epilepsy Foundation Concerns Index. Patients with epilepsy (n=257) with varying degrees of seizure control from the outpatient clinic practices of five prescribing practitioners completed the modified concerns index. The three most frequent concerns reported by patients were having a seizure unexpectedly, issues related to driving, and memory problems. These were similar to those reported by the practitioners, though memory was much less of a concern expressed by the practitioner. For the paired data, the concern with the largest gap from the patients' perspective was "your memory." Though there was an overlap, patients were concerned more about life issues and practitioners were concerned about clinical issues. This should serve as a major "wakeup call" to address memory problems in patients with epilepsy, regardless of seizure control.

Depression in epilepsy: why aren't we treating?

Depression is a common and largely untreated comorbidity in patients with epilepsy. Our aim was to examine physician attitudes that may contribute to this treatment gap. We surveyed primary care physicians, neurologists, and psychiatrists chosen from the Ohio State Medical Board registry on the topics of depression in epilepsy, seizures with antidepressant use, and comfort in treating depression in epilepsy. Our data identified fear of increased seizure frequency with antidepressant use as a significant barrier to treatment. There was a clear inverse relationship between the estimated risk of antidepressant-induced seizures and comfort treating depression in epilepsy (P = 0.02), with 52% of primary care physicians identifying this as a reason for not treating depression in this population. Further education of community physicians and neurologists regarding the importance of treating depression in patients with epilepsy and research into the use of antidepressants in this population are indicated.