Objectives: 

To report on 5-year survival, health-related quality of life (HRQoL), and occupational status of patients with respiratory or cardiac failure, who were supported with extracorporeal membrane oxygenation (ECMO).

Design: 

A prospective multicenter observational cohort follow-up study.

Setting: 

ICUs of ten ECMO centers in the Netherlands, representing more than 90% of all patients supported with ECMO in the Netherlands.

Patients: 

Patients supported with ECMO between August 2017 and July 2019.

Interventions: 

None.

Measurements and Main Results: 

Survival was assessed by consulting the Dutch municipal records database. All 5-year survivors received a questionnaire. HRQoL was assessed using the standardized EuroQol 5D Five Levels instrument, and occupational status was assessed using the standardized Institute for Medical Technology Assessment Productivity Cost Questionnaire. Of the initial 428 participants, 230 (54%) survived the hospital admission, 213 (50%) survived the first year, and 155 (36%) survived 5 years. Five-year survival rates were 42% for patients receiving ECMO for respiratory support, 39% for cardiac support, and 25% for extracorporeal cardiopulmonary resuscitation. The response rate to the questionnaire was 72%. HRQoL was rated satisfactory at 5 years, with a median EuroQol index of 0.82 (interquartile range, 0.73–0.98). Five-year survivors reported slight-to-moderate impairment of mobility (39%), impairment of usual activities (44%), and pain or discomfort (60%). After 5 years, the majority of patients were either employed (41%), retired (31%), or permanently declared unfit for work (26%).

Conclusions: 

Long-term outcome in patients supported with ECMO is good. Five-year survivors reported that HRQoL was satisfactory despite some impairment in day-to-day functioning.