Long-term outcomes and life-impacts of necrotizing enterocolitis: A survey of survivors and parents

Necrotizing enterocolitis (NEC) is a devastating intestinal disease that primarily affects pre-mature infants. Necrotizing enterocolitis is associated with adverse two-year outcomes, yet limited research has evaluated the impact of NEC on long-term complications and qual-ity of life in children older than two years. We conducted a survey to characterize the long-term impact of NEC on physical and mental health, social experiences, and quality of life as self-reported by adult NEC survivors and parents of children who survived NEC. To our knowledge, this is the first study that describes the lived experience of NEC survivors and parents of children affected by NEC to understand their experience years after the original diagnosis. Our survey results describe that NEC survivors and parents of children affected by NEC experience long-term complications that impact their physical and mental health, social experiences, and quality of life. (c) 2022 Elsevier Inc. All rights reserved.

Automated summary

Necrotizing enterocolitis (NEC) is a devastating intestinal disease that primarily affects pre-mature infants. Limited research has evaluated the impact of NEC on long-term complications and quality of life in children older than two years. This study provides insight into the lived experience of NEC survivors and parents of children affected by NEC, revealing the long-term physical, mental, and social impacts of the disease on their quality of life.