Background: Sudden unexpected death in epilepsy (SUDEP) is a common cause of premature death in children and adults with epilepsy. People with epilepsy and their caregivers prefer the risk of SUDEP to be disclosed by their clinicians; however, few tools exist to support these conversations.
Methods: We aimed to (1) characterize SUDEP communication preferences of clinicians and caregivers of children with epilepsy, and (2) leverage these preferences to develop a conversation guide to support the discussion of SUDEP risk. We prospectively enrolled caregivers of children with epilepsy, child neurology clinicians, and child neurology trainees to participate in virtual focus groups and/or 1:1 interviews.
Results: Content was analyzed and collated into the following four domains: (1) who should participate: all participants described that the treating neurologist and/or epileptologist should lead conversations with patients and families. Caregivers preferred that clinicians disclose information about SUDEP to children only after asking permission. (2) When and where conversations should occur: most participants felt that the conversation should be discussed at the time of diagnosis and in the outpatient setting, (3) content to include about SUDEP risk: participants characterized the need to define SUDEP, what is known and unknown, as well as describe risk factors to reduce an individual child's risk, and (4) barriers and facilitators to disclosure: barriers included lack of time, limited evidence-based information regarding risk mitigation, lack of modifiable risk factors, and apprehension of causing undue stress on families. Participants shared that written material would help facilitate the discussion.
Conclusions: Caregivers and clinicians emphasized the value of SUDEP risk counseling in the pediatric clinical setting. Based on these findings, neurologists caring for children with epilepsy should educate caregivers about SUDEP soon after the initial epilepsy diagnosis in an empathetic manner, revisiting the conversation longitudinally over time and highlighting actionable steps to mitigate risk. Caregiver and clinician preferences informed our novel adaptation of the SPIKES protocol for use by pediatric neurologists in the context of SUDEP risk disclosure.
Keywords: Communication; Prevention; Risk factors; Sudden unexpected death in epilepsy (SUDEP).
Copyright © 2024. Published by Elsevier Inc.