Parent perspectives on family-centered follow-up after pediatric ECMO

Abstract

The objective of this study was to elicit caregiver perspectives regarding vital components of and challenges to participating in post-extracorporeal membrane oxygenation (ECMO) follow-up care. It was conducted as a single-center electronic survey in a tertiary pediatric hospital with neonatal and pediatric ECMO capabilities. Pediatric survivors less than 18 years of age who survived ECMO between January 2015 and December 2020 were included. An attempt was made to contact 143 eligible families. Fifty of the ninety-three (54%) families who were successfully contacted consented and provided survey responses. Thirty (60%) pediatric ECMO survivors were male, with a median age of 3 months at cannulation and an ECMO duration of 92 h. Eleven (37%) children were categorized as having “fair” or “poor” overall health after ECMO therapy. A majority of respondents were either “extremely likely” or “somewhat likely” to participate in an in-person or virtual multidisciplinary ECMO follow-up (31 (66%) and 36 (77%), respectively). In response to open-ended survey questions, parents expressed need for increased support in three main domains: information/education, psychosocial support, and healthcare coordination. These findings suggest an urgent need to establish a structured, multidisciplinary ECMO follow-up program and to include parents and patients in its development.