Communication About Sudden Unexplained Death in Epilepsy
Abstract number :
3.371
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2023
Submission ID :
992
Source :
www.aesnet.org
Presentation date :
12/4/2023 12:00:00 AM
Published date :
Authors :
Presenting Author: Kayli Maney, MD – Duke University School of Medicine
Presenting Author: Shital Patel, MD – Duke University Medical Center
Isabella Pallotto, MPH – Duke University School of Medicine; Simran Bansal, BS – Duke University School of Medicine; Renee Shellhaas, MD,MS – Washington University School of Medicine; Shital Patel, MD – Duke University School of Medicine; Zachary Grinspan, MD – Weill Cornell Medicine; Jeffrey Buchhalter, MD, PhD – Alberta Children's Hospital; Elizabeth Donner, MD, MSc, FRCPC – The Hospital for Sick Children; Gardiner Lapham, MPH, RN – BAND Foundation; Thomas Stanton, MPP – Danny Did Foundation; Monica Lemmon, MD – Duke University School of Medicine
Rationale: Professional guidelines and published research support the need to routinely disclose the risk of sudden unexplained death in epilepsy (SUDEP) to people with epilepsy and their families. Limited tools are available to support these conversations.
Methods: We conducted a qualitative study to characterize the SUDEP communication preferences of clinicians and caregivers of children with epilepsy. We enrolled caregivers, child neurology clinicians, and trainees. Caregivers were recruited using a social media-driven approach, in which a survey was disseminated by stakeholder organizations. Respondents were invited to participate in virtual focus groups. Child neurology trainees were recruited to participate in an in-person focus group from a cohort attending the 2022 Pellock Epilepsy Seminar. Child neurology clinicians were recruited via the Child Neurology Society listserv and participated in 1:1 virtual semi-structured interviews. Content was analyzed using a rapid qualitative analysis approach. Structured summaries for each event were collated and synthesized to characterize key domains of communication preferences.
Results: We completed three caregiver focus groups (n=16 participants), one trainee focus group (n=8 participants), and thirteen individual interviews with clinicians (n=11) and caregivers (n=2). Findings were organized into four key domains: 1) Who should participate in SUDEP risk conversations: Participants uniformly endorsed that the treating neurologist and/or epileptologist should lead conversations about SUDEP risk disclosure. Caregivers preferred that clinicians ask permission prior to disclosing information about SUDEP risk in the presence of their child. 2) When and where conversations about SDUEP should occur: Most participants felt that conversations surrounding SUDEP should occur early in the child's course and in the outpatient setting when possible. While caregivers endorsed conversations occurring at the time of epilepsy diagnosis, some clinicians shared the preference to address SUDEP risk after establishing rapport, 3) Content to include in SUDEP risk conversations: Participants shared that clinicians leading conversations about SUDEP should offer a definition, individualize discussions of risk factors, review risk reduction strategies, and provide informational and support resources, 4) Barriers and facilitators to SUDEP risk disclosure: Barriers cited to SUDEP risk disclosure included concern for exacerbating caregiver distress, discomfort communicating uncertainty, lack of tailored communication training, and insufficient time. Participants underscored that these barriers should not preclude conversations about SUDEP risk. Participants shared a range of tools to support SUDEP risk disclosure, including informational resources, electronic medical record-based prompts, and tailored checklists.
Conclusions: In this study, caregivers and clinicians offered actionable strategies to inform best practices in SUDEP risk disclosure. These findings will support the creation of targeted resources and communication skills trainings to support conversations about SUDEP risk.
Funding: BAND Foundation
Health Services (Delivery of Care, Access to Care, Health Care Models)