Predictors of SUDEP counseling and implications for designing interventions

• Published in: Epilepsy & behavior 2021-04, Vol.117, p.107828-107828, Article 107828
• Main Authors: Barbour, Kristen, Yozawitz, Elissa G., McGoldrick, Patricia E., Wolf, Steven, Nelson, Aaron, Grinspan, Zachary M.
• Format: Article
• Language: English
• Subjects: Adult; Child; Counseling; Death, Sudden - epidemiology; Death, Sudden - prevention & control; Disclosure; Electronic health records; Epilepsy; Epilepsy - complications; Epilepsy - therapy; Humans; Intervention; Risk Factors; Seizures; Sudden Unexpected Death in Epilepsy
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2021.107828

•Documentation of SUDEP counseling was rare and did not increase from 2010 to 2014.•The majority of those counseled had refractory epilepsy or a modifiable risk factor.•Clinicians in adult practice were more likely to document counseling.•The hospital where clinicians work may influence counseling practices.•More experienced clinicians were more likely to counsel for patient education only. We aimed to describe how often and why clinicians counsel people with epilepsy about sudden unexpected death in epilepsy (SUDEP). Understanding counseling gaps can help design interventions. We searched clinical notes of 77,924 patients from 2010 to 2014 from six hospitals to find examples of SUDEP counseling and seizure safety counseling. Visits were coded for patient, clinician, and visit factors, and documented reasons for counseling. We evaluated factors associated with SUDEP vs. seizure safety counseling, and reasons for counseling using bivariate and multivariable statistics. Reasons for counseling included: poor medication adherence, lifestyle factors (e.g., poor sleep, drinking alcohol), patient/family reluctance to make recommended medication adjustment, epilepsy surgery considerations, and patient education only. Analysis was restricted to two of six hospitals where 91% of counseling occurred. Documentation of SUDEP counseling was rare (332 of 33,821 patients, 1.0%), almost exclusively by epileptologists (98.5% of counseling), and stable over time, X2 (4, n = 996) = 3.81, p = 0.43. Adult neurologists were more likely to document SUDEP counseling than pediatric (OR = 1.65, 95% CI = 1.12–2.44). Most SUDEP counseling was documented with a goal of seizure reduction (214 of 332, 64.5%), though some was for patient education only (118 of 332, 35.5%). By the time SUDEP counseling was documented, the majority of patients had refractory epilepsy (187 of 332, 56.3%) and/or a potentially modifiable risk factor (214 of 332, 64.5%). Neurologists with more years of clinical experience (OR = 2.18, 95% CI = 1.12–4.25) and more senior academic titles (OR = 2.25, 95% CI = 1.27–3.99) were more likely to document SUDEP counseling for patient education only. People with ≥2 anti-seizure medications (ASM) were more likely to receive counseling for patient education (OR = 2.72, 95% CI = 1.49–4.97). Documentation of SUDEP is rare, and varies by clinician, hospital, and patient factors. Efforts to increase SUDEP counseling should focus on junior clinicians, and emphasize starting the c