Authors :
Presenting Author: Judith Luker, BA (hons) – UCB Ltd
Philippe Ryvlin, MD – Department of Clinical Neuroscience, Lausanne University Hospital; Tom Stanton, MPS – Danny Did Foundation; Sara Shaw, PhD – Mearns & Pike; Kirsty Mearns, MBiochem – Mearns & Pike
Rationale:
Global clinical guidelines recommend that people with epilepsy (PWE) should be counseled on sudden unexpected death in epilepsy (SUDEP). Recent publications suggest that the guidelines have not been fully adopted. We aim to describe what PWE/caregivers need and want to know versus what they are hearing from neurologists and to understand the beliefs underpinning these decisions.
Methods:
We conducted a systematic literature review of studies from January 1, 2013 to April 5, 2023 using PubMed and the following search terms: (SUDEP) AND (counseling OR education OR caregiver OR clinician). Hits were searched against the topics of interest and duplicates; non-English language or preclinical studies were excluded.
Results:
Of 172 studies identified, 60 were about SUDEP conversations. All studies that reported caregivers’ needs and experiences of SUDEP (n=32) indicated most PWE/caregivers wanted to be informed by their treating neurologist about SUDEP irrespective of their emotional reaction.
Studies reporting on experts’ attitudes and behavior towards SUDEP conversations (n=21) showed most neurologists agreed counseling on SUDEP was important. Only 1.8–12.0% of neurologists discussed SUDEP >90% of the time; there were regional differences. Neurologists often initiated a discussion about SUDEP if the PWE was considered high-risk, with the aim to reduce the risk of seizures. The most common reason for not discussing SUDEP was fear of causing harm and negative emotions among PWE/caregivers. The outcome of not counseling on SUDEP was that PWE/caregivers were unprepared and unable to make informed decisions. PWE/caregivers felt like they had a right to know. In two studies, uninformed, bereaved caregivers felt regret and guilt for being unable to try any-risk reduction precautions and they felt blindsided and angry at losing a loved one.
Face to face discussions about SUDEP were preferred due to the delicate nature of the topic accompanied by written/online information to reinforce key messages. Despite the implementation of guidelines on SUDEP counseling, there is no standardized approach for counseling on SUDEP but methods to improve the quality of the conversation included: referring to scientific data, normalizing the situation, open discussions, and emphasizing the risks of poor epilepsy control. Key topics for a meaningful discussion about SUDEP were: risk factors, prevalence and risk reduction methods. Independent predictors for neurologists counseling on SUDEP included: >19 years’ clinical experience and caring for >100 PWE/year. Educational interventions for neurologists were proposed to bridge knowledge gaps regarding SUDEP or handling difficult conversations with PWE/caregivers. Most PWE/caregivers preferred to be informed about SUDEP at the time of diagnosis or soon after.
Conclusions:
This review highlights that there is a gap between what PWE/caregivers want regarding information about SUDEP and the information shared by neurologists. Supporting and training neurologists to become adept at initiating difficult discussions with PWE/caregivers may help to build a trusting partnership to enhance epilepsy management in turn, reducing the risks for SUDEP.
Funding:
UCB-Pharma