Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy

Abstract

Objective: Despite increased awareness of the serious epilepsy complication sudden unexpected death in epilepsy (SUDEP), a substantial population of people with epilepsy (PWE) remain poorly informed. Physicians indicate concern that SUDEP information may adversely affect patients' health and quality of life. We examined SUDEP awareness and the immediate and long-term effects of providing SUDEP information to PWE.Methods: Baseline knowledge and behaviors among PWE and behavioral adjustments following the provision of SUDEP information were evaluated in a prospective, multicenter survey using the following validated scales: Neurological Disorders Depression Inventory for Epilepsy for depression symptoms, the EuroQoL five-dimension scale for health-related quality of life (HRQoL), a visual analog scale for overall health, the revised Epilepsy Stigma Scale for perceived stigma, and the Seizure Worry Scale for seizure-related worries. The prospective study collected data through semiquantitative interviews before (baseline), immediately after, and 3 months after the provision of SUDEP information. Results: In total, 236 participants (mean age = 39.3 years, range = 18-77 years, 51.7% women) were enrolled, and 205 (86.9%) completed long-term, 3-month follow-up. One patient died from SUDEP before follow-up. No worsening symptoms from baseline to 3-month follow-up were observed on any scale. At baseline, 27.5% of participants were aware of SUDEP. More than 85% of participants were satisfied with receiving SUDEP information. Three quarters of participants were not concerned by the information, and >80% of participants recommended the provision of SUDEP information to all PWE. Although most patients reported no behavioral adjustments, 24.8% reported strong behavioral adjustments at 3-month follow-up.

SUDEP counseling: Where do we stand?

“…18,27,29,30 In recent studies, >80% to 100% of PWEs and their caregivers have indicated the right to be informed about SUDEP. 31,32 Although PWEs recognize that discussing SUDEP may be alarming or frightening when receiving a diagnosis, this is usually short-lived. 33 When SUDEP is not discussed with PWEs and their caregivers, there is the potential that information may be sought from other sources, which can result in misinformation and anxiety.…”

“…30 Moreover, in a recent study in adults on the long-term impacts of learning about SUDEP, one-fourth of participants indicated that they had made substantial behavioral adjustments 3 months after learning about SUDEP. 31 Despite these findings, additional studies are needed to determine how counseling about SUDEP influences epilepsy selfmanagement and, ultimately, SUDEP risk. 37…”

“… 28 The overwhelming majority of PWEs with epilepsy and their caregivers want to be informed about SUDEP and do not have long‐lasting anxiety after it is discussed (i.e., subsides in 3 months) 18,27,29,30 . In recent studies, >80% to 100% of PWEs and their caregivers have indicated the right to be informed about SUDEP 31,32 . Although PWEs recognize that discussing SUDEP may be alarming or frightening when receiving a diagnosis, this is usually short‐lived 33 .…”

“…Positive changes in behavior following SUDEP disclosure have been shown in recent studies. 30,31 Some neurologists suggest there could be harm in sharing information that a PWE or caregiver did not actively seek. 17,39 However,, the provision of SUDEP information has not adversely affected the overall health or quality of life over time for PWEs.…”

“…17,39 However,, the provision of SUDEP information has not adversely affected the overall health or quality of life over time for PWEs. 31 Overall, SUDEP disclosure is crucial in high-risk PWEs and thus should not be debated.…”