Rozmowy o bezpieczeństwie i nagłych nieoczekiwanych zgonach w epilepsji (SUDEP) u nastolatków: wyniki krótkookresowej interwencji doradczej
Navigating safety and sudden unexpected death in epilepsy (SUDEP) discussions in adolescents with epilepsy: short-term outcomes of a structured counselling intervention
W skrócie
Badanie oceniało bezpieczeństwo rozmów o SUDEP (nagłych nieoczekiwanych zgonach w epilepsji) u nastolatków chorych na epilepsję. Trzydziestu nastolatków otrzymało strukturalne doradztwo obejmujące edukację o epilepsji, bezpieczeństwie oraz zagrożeniach związanych z SUDEP. Po interwencji zaobserwowano znaczną poprawę w zachowaniach zmniejszających ryzyko SUDEP, takich jak regularne przyjmowanie leków, prawidłowy sen i plany działania podczas napadów, bez negatywnego wpływu na psychikę uczestników.
Oryginalny abstract (angielski)
BACKGROUND: Sudden unexpected death in epilepsy (SUDEP) is the leading cause of epilepsy-related mortality, with potentially modifiable risk factors. Adolescence poses increased vulnerability to SUDEP due to increasing autonomy and risk-taking behaviors. Literature on SUDEP communication in adolescents is scarce. We aimed to evaluate the outcomes of incorporating SUDEP communication within safety counseling in adolescents with epilepsy. METHODS: In this pilot single-group pre- and post-intervention study, adolescents aged 13-18 years with epilepsy underwent baseline questionnaire-based assessment of epilepsy-related self-care behaviors and emotional state using the Depression Anxiety Stress Scale-21 (DASS-21). Participants received a structured counseling integrating epilepsy education, safety counseling, and SUDEP-related risk communication through written material and an informative video, followed by a face-to-face discussion. Outcomes were assessed at one-month. RESULTS: Thirty adolescents (20 boys, median age 14.5 years, IQR 13-16 years) were enrolled. Post-intervention, significant improvements were observed in behaviours relevant to SUDEP risk reduction, including medication adherence, sleep practices, seizure action planning, availability of rescue medications, and avoidance of unsafe activities (p < 0.05). Safety behaviours showed the greatest improvement, with 93.3% demonstrating change in at least one safety parameter. No significant change in DASS-21 scores was observed. The majority endorsed the inclusion of SUDEP communication as part of safety counseling. CONCLUSIONS: Integrating SUDEP communication into safety counseling was both feasible and acceptable and it did not result in emotional distress. The intervention also led to short-term improvements in safety-related behaviors. However, longer-term follow-up is needed to determine whether these changes are sustained over time.