Objectives: 

To examine parental experiences of childhood extracorporeal membrane oxygenation survivors to understand: 1) the problems children faced and 2) the support received following hospital discharge.

Design: 

Single-center descriptive study.

Setting: 

Nationally commissioned center for neonatal and pediatric extracorporeal membrane oxygenation.

Patients: 

All traceable survivors less than 18 years old who received extracorporeal membrane oxygenation from January 1998 to April 2013.

Intervention: 

Anonymized postal questionnaire completed by parents of extracorporeal membrane oxygenation survivors.

Measurements and Main Results: 

Parent-reported developmental problems, follow-up, and the degree of satisfaction with any follow-up experience. Parents of 89 of 366 extracorporeal membrane oxygenation survivors (24%) responded. Sixty-six (74%) reported having developmental concerns about their child, including speech and language (n = 32; 36%), concentration (n = 28; 31%), movement/physical difficulties (n = 26; 29%), and educational difficulties (n = 22; 25%); 46 (52%) indicated that their child had difficulties across multiple domains. Twenty-one (34%) of those with one or more reported developmental concerns were not receiving any follow-up. However, 57 (64%) attended our 1-year follow-up extracorporeal membrane oxygenation clinic and 54 of 57 (95%) found it very useful. Three themes related to perceived need were identified from parents’ free-text comments: the need for an expert point of contact and follow-up at the extracorporeal membrane oxygenation center; more information on extracorporeal membrane oxygenation and any long-term effects; and more support from, and easier access to, community specialist services.

Conclusions: 

A proportion of children who have undergone extracorporeal membrane oxygenation treatment have needs that are not being met, with variable access to service provision. Structured follow-up after discharge would enable early identification of developmental concerns, permit early referral or intervention, and provide support to families. Education and sharing of information about extracorporeal membrane oxygenation with general practitioners/family physicians, community professionals, and schools are essential.