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. 2023 Feb;47(1):151696.
doi: 10.1016/j.semperi.2022.151696. Epub 2022 Dec 31.

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

Jennifer Canvasser  1 , Ravi Mangal Patel  2 , Erin Pryor  3 , Linseigh Green  3 , Susan R Hintz  4 , Maureen Fagan  5 , James D Harrison  6
Affiliations

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

Jennifer Canvasser et al. Semin Perinatol. 2023 Feb.

Abstract

Necrotizing enterocolitis (NEC) is a devastating intestinal disease that primarily affects premature infants. Necrotizing enterocolitis is associated with adverse two-year outcomes, yet limited research has evaluated the impact of NEC on long-term complications and quality 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.

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Conflict of interest statement

Declaration of Competing Interest Ravi Mangal Patel, MD, MSc Financial Interest; Infant Bacterial Therapeutics/Premier Research (Currently Ongoing) (Products/Services: Consultant) All other authors report no proprietary or commercial interest in any product mentioned or concept discussed in this article.

Figures

Fig. 1–
Fig. 1–. Location of Respondents.
Fig. 2–
Fig. 2–. Content Analysis Exploring Self-Reported Long-Term Outcomes and Life-Impacts of NEC Survivors and Parents.
See this image and copyright information in PMC

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