TY - JOUR
T1 - Epilepsy professionals' views on sudden unexpected death in epilepsy counselling
T2 - A tale of two countries
AU - Watkins, Lance
AU - Henning, Oliver
AU - Bassett, Paul
AU - Ashby, Samantha
AU - Tromans, Samuel
AU - Shankar, Rohit
N1 - Publisher Copyright:
© 2024 The Author(s). European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.
PY - 2024/6/4
Y1 - 2024/6/4
N2 - Background and purpose: Sudden unexpected death in epilepsy (SUDEP) is a leading cause of epilepsy mortality. All international guidance strongly advocates for clinicians working with people with epilepsy (PWE) to discuss SUDEP. Clinician views working with PWE in the UK and Norway on SUDEP counselling are compared. Methods: A cross-sectional online mixed methodology survey of 17 Likert and free-text response questions using validated themes was circulated via International League against Epilepsy/Epilepsy Specialist Nurses Association in the UK and International League against Epilepsy/Epilepsinet in Norway using a non-discriminatory exponential snowballing technique leading to non-probability sampling. Quantitative data were analysed using descriptive statistics and Mann–Whitney, Kruskal–Wallis, chi-squared and Fisher's exact tests. Significance was accepted at p < 0.05. Thematic analysis was conducted on free-text responses. Results: Of 309 (UK 197, Norway 112) responses, UK clinicians were more likely to have experienced an SUDEP (p < 0.001), put greater importance on SUDEP communication (p < 0.001), discuss SUDEP with all PWE particularly new patients (p < 0.001), have access and refer to bereavement support (p < 0.001) and were less likely to never discuss SUDEP (p < 0.001). Significant differences existed between both countries’ neurologists and nurses in SUDEP counselling with UK clinicians generally being more supportive. UK responders were more likely to be able to identify bereavement support (p < 0.001). Thematic analysis highlighted four shared themes and two specific to Norwegians. Discussion: Despite all international guidelines stating the need/importance to discuss SUDEP with all PWE there remain hesitation, avoidance and subjectivity in clinicians having SUDEP-related conversations, more so in Norway than the UK. Training and education are required to improve communication, engagement and decision making.
AB - Background and purpose: Sudden unexpected death in epilepsy (SUDEP) is a leading cause of epilepsy mortality. All international guidance strongly advocates for clinicians working with people with epilepsy (PWE) to discuss SUDEP. Clinician views working with PWE in the UK and Norway on SUDEP counselling are compared. Methods: A cross-sectional online mixed methodology survey of 17 Likert and free-text response questions using validated themes was circulated via International League against Epilepsy/Epilepsy Specialist Nurses Association in the UK and International League against Epilepsy/Epilepsinet in Norway using a non-discriminatory exponential snowballing technique leading to non-probability sampling. Quantitative data were analysed using descriptive statistics and Mann–Whitney, Kruskal–Wallis, chi-squared and Fisher's exact tests. Significance was accepted at p < 0.05. Thematic analysis was conducted on free-text responses. Results: Of 309 (UK 197, Norway 112) responses, UK clinicians were more likely to have experienced an SUDEP (p < 0.001), put greater importance on SUDEP communication (p < 0.001), discuss SUDEP with all PWE particularly new patients (p < 0.001), have access and refer to bereavement support (p < 0.001) and were less likely to never discuss SUDEP (p < 0.001). Significant differences existed between both countries’ neurologists and nurses in SUDEP counselling with UK clinicians generally being more supportive. UK responders were more likely to be able to identify bereavement support (p < 0.001). Thematic analysis highlighted four shared themes and two specific to Norwegians. Discussion: Despite all international guidelines stating the need/importance to discuss SUDEP with all PWE there remain hesitation, avoidance and subjectivity in clinicians having SUDEP-related conversations, more so in Norway than the UK. Training and education are required to improve communication, engagement and decision making.
KW - education and training
KW - epilepsy harm
KW - epilepsy mortality
KW - epilepsy risk
KW - seizure-related death
KW - Attitude of Health Personnel
KW - Cross-Sectional Studies
KW - Humans
KW - Norway/epidemiology
KW - Male
KW - Epilepsy/mortality
KW - Sudden Unexpected Death in Epilepsy
KW - United Kingdom/epidemiology
KW - Counseling
KW - Female
KW - Adult
KW - Surveys and Questionnaires
UR - http://www.scopus.com/inward/record.url?scp=85195295883&partnerID=8YFLogxK
UR - https://pearl.plymouth.ac.uk/context/pms-research/article/2131/viewcontent/Euro_J_of_Neurology___2024___Watkins___Epilepsy_professionals_views_on_sudden_unexpected_death_in_epilepsy_counselling_A.pdf
U2 - 10.1111/ene.16375
DO - 10.1111/ene.16375
M3 - Article
C2 - 38837829
AN - SCOPUS:85195295883
SN - 1351-5101
VL - 31
JO - European Journal of Neurology
JF - European Journal of Neurology
IS - 9
M1 - e16375
ER -