A qualitative study of the reactions of young adults with epilepsy to SUDEP disclosure, perceptions of risks, views on the timing of disclosure, and behavioural change

• Using qualitative methods, we explored SUDEP disclosure in 16- to 30-year-olds.
• Anxiety after disclosure was short-lived.
• Most young people wanted information about SUDEP.
• A majority thought that physician judgment about disclosure is important.
• Knowledge of SUDEP did not result in improved compliance in most cases.

ObjectiveWe examined young adults' responses to information about sudden unexpected death in epilepsy (SUDEP).MethodConsecutive patients attending a specialist epilepsy clinic, aged 16–30 years, with a Hospital Anxiety and Depression Scale (HADS) score of < 11, and who had been told about SUDEP at least 2 weeks previously, were invited to the study. Semistructured in-depth interviews were conducted by an experienced qualitative interviewer until data saturation was achieved. An inductive thematic analysis of the data was conducted, facilitated by the use of the qualitative data analysis software (NVivo). The study was approved by the South East Scotland Research Ethics Committee.ResultsTwenty-seven patients (15 females) aged 18–29 years were interviewed. All said that they were satisfied with the information that they had received about SUDEP. However, at the interview, their understanding of SUDEP was often limited and incorrect. Many were not aware of their own SUDEP risk status. Twenty-two (81%) said that everyone should be told about SUDEP. Most thought that disclosure should happen at the time of the diagnosis or soon after, preferably in a face-to-face consultation; clinician judgment on timing was highlighted. Few reported seeking further information on SUDEP for themselves beyond the initial consultation. Most were either untroubled by the initial disclosure of SUDEP or reported initial anxiety that was not long-lasting. A minority reported changing their behavior, for example, improving medication adherence, but most reported no change. The majority expressed a fatalistic view of SUDEP as something outside of their control.SignificanceOur results suggest that clinicians can be more confident that most of their young adult patients want to know about SUDEP, want to be told early, and do not have long-lasting anxiety due to its disclosure. Getting information on SUDEP will not, on its own, increase medication adherence in most patients. Methods to increase patient understanding of SUDEP are needed.