Abstracts

Rationale:
Sudden Unexpected Death in Epilepsy (SUDEP) is a devastating complication which impacts 1 in 1,000 adult and pediatric patients with epilepsy. Despite studies indicating that the majority of patients desire knowledge about SUDEP (Xu et al., 2015) the majority of neurologists do not provide this information. In this study we sought to determine the attitudes of primary care providers who serve a largely uninsured population with regard to the discussion of SUDEP.
Method:
In the first phase of this study, surveys were administered to 6 clinicians at Wesley Community Clinic in Phoenix, Arizona. This clinic provides care for predominantly uninsured Hispanic individuals. The surveys were aimed at ascertaining awareness of SUDEP, frequency and timing of SUDEP discussions with patients, and reasons for not discussing SUDEP.
Results:
Six clinicians (3 physicians and 3 nurse practitioners) were surveyed. Two of each group were aware of the risk of SUDEP. When asked how often they discussed SUDEP, 83.3% answered “never” and 16.7% answered “rarely” (1-9% of the time). 50% indicated they were most likely to discuss SUDEP when the patient or caregiver asked. The reasons for not discussing SUDEP are displayed in Figure 1 (each clinician could indicate more than 1 reason). “Don’t know enough about SUDEP” was indicated by 5 of 6 (83.3%) clinicians and 3 of 6 (50%) also indicated they would “defer the discussion to a neurology specialist or managing provider”.
Conclusion:
Results of this study are consistent with the literature showing that the majority of healthcare providers do not discuss SUDEP with patients/caregivers. This is especially important among family medicine practitioners who may be the only provider to which the uninsured have access. As limited health literacy is one of the multiple social determinants of health that affect this population, waiting for patients to ask about SUDEP is not a viable option. Providers not knowing enough about SUDEP to feel comfortable discussing it with patients demonstrates that SUDEP education continues to be needed for primary care providers. The reasons indicated by providers for not discussing SUDEP in this pilot study provide a starting point for designing interventions to facilitate the discussion of SUDEP in this population. Future studies will include a survey of uninsured patients to better understand their knowledge of SUDEP and preferences for when it is discussed. Xu, Z., Ayyappan, S., Seneviratne, U. Sudden unexpected death in epilepsy (SUDEP): What do patients think? Epilepsy Behavior. 2015;42:29-34.
Funding:
:None