Long-term outcomes and quality of life of out-of-hospital cardiac arrest survivors treated with extracorporeal cardiopulmonary resuscitation and their caregivers

Introduction Survivors of out-of-hospital cardiac arrest (OHCA) are at risk of long-term neurological, cognitive, and psychological impairment, and this burden may extend to their caregivers. We evaluated long-term survival and multidimensional outcomes in survivors of refractory OHCA treated with extracorporeal cardiopulmonary resuscitation (ECPR) and in their caregivers. Methods Adults discharged alive after ECPR for refractory OHCA at a tertiary centre (2013-2024) were included. Survivors underwent long-term assessment of functional status and cognition, and self-reported psychological well-being, sleep, fatigue, return to work, and quality of life (QoL). One caregiver per survivor was evaluated for psychological distress, QoL, fatigue, and perceived burden. Results Among 406 ECPR-treated patients, 63 (16%) were discharged alive. At a median follow-up of 3.1 (IQR 0.6–6.9) years, 38/62 (61%) were alive, of whom 31 (82%) had favourable neurological outcome. Only 7 of all 406 treated patients (1.7%) were alive with poor neurological outcome. Five-year mortality was higher in patients discharged with poor versus favourable neurological status (86% vs. 13%, p<0.001). Among the 17 survivors and 19 caregivers assessed, QoL was preserved and comparable between groups (EQ VAS 70 [60–80] vs 80 [75–90]). Most survivors and caregivers reported no limitations in mobility, self-care, or usual activities. Mild cognitive impairment was found in 6/16 survivors and poor sleep quality in 10/17. Anxiety symptoms were more frequent among caregivers than survivors (6/18 vs 1/17). No participant met criteria for symptomatic post-traumatic stress disorder. Seven of 15 previously employed survivors and all caregivers returned to work. Conclusions Long-term survival after ECPR was largely confined to patients with favourable neurological recovery. Despite preserved overall QoL, survivors frequently showed cognitive impairment and reported sleep disturbances. Anxiety symptoms were common among caregivers. These findings support structured long-term follow-up programmes for both survivors and their families.