• Suzan Kakat, Maura O'Callaghan, Liz Smith, Raymond Hreiche, Deborah A Ridout, Jo Wray, Timothy Thiruchelvam, Katherine L Brown, and Aparna U Hoskote.
• 1Cardiac Intensive Care Unit, Charles West Division, Great Ormond Street Hospital NHS Foundation Trust, London, United Kingdom. 2Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, United Kingdom.
• Pediatr Crit Care Me. 2017 Nov 1; 18 (11): 1047-1054.

ObjectivesTo establish the effectiveness of a "1-year extracorporeal membrane oxygenation follow-up clinic" and to characterize any neurodevelopmental concerns identified.DesignSingle-center retrospective cohort of respiratory extracorporeal membrane oxygenation survivors over 10 years.SettingNationally commissioned center for neonatal and pediatric (> 28 d of life) respiratory extracorporeal membrane oxygenation.PatientsChildren attending the follow-up clinic 1 year after receiving respiratory extracorporeal membrane oxygenation between 2003 and 2013.InterventionsStandardized follow-up 1 year after extracorporeal membrane oxygenation.Measurements And Main ResultsIn 10 years, 290 children received extracorporeal membrane oxygenation, 194 (67%) survived; all were offered 1-year follow-up, and 98 (51%) attended the clinic. Among these, 51 of 98 (52%) had meconium aspiration syndrome, and 74 of 98 (75%) were on veno-arterial extracorporeal membrane oxygenation with a median (interquartile range) duration of 6 days (4-8 d). Neurodevelopmental problems were identified in 30 of 98 (30%). The specific abnormalities noted included neurologic (seizures, motor, or vision abnormalities) (n = 8), hearing with/without language delay (n = 8), and behavioral problems (as reported by parents) (n = 6), with eight of 30 (27%) having difficulties spanning these domains. An acute neurologic event on extracorporeal membrane oxygenation was found to be the only risk factor for neurodevelopmental concerns (p = 0.006 with odds ratio 5.4 [95% CI, 1.63-17.92]). Despite having neither a cardiac arrest nor an acute neurologic event documented, 18 of 74 (24.3%), 95% CI (15.1-35.7), had neurodevelopmental concerns at 1-year follow-up. Among the nonattenders, 30 (15%) had local follow-up, and 66 (34%) were lost to follow-up.ConclusionsAll extracorporeal membrane oxygenation survivors need follow-up either at the extracorporeal membrane oxygenation center or in their community, as evidenced by the 1-year follow-up data. Our 1-year extracorporeal membrane oxygenation follow-up clinic provides an opportunity to engage with families, identify neurodevelopmental concerns, and signpost to appropriate services. Of concern, one third of survivors are lost to follow-up, some with an acute neurologic event on extracorporeal membrane oxygenation, a significant risk factor. A consensus-based standardized national follow-up program is vital.

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