Long-term Outcomes and Life-impacts of Necrotizing Enterocolitis: A Survey of Survivors and Parents

Overview

Journal Semin Perinatol

Specialty Gynecology & Obstetrics

Date 2023 Jan 11

PMID 36631356

Authors

Jennifer Canvasser

Ravi Mangal Patel

Erin Pryor

Linseigh Green

Susan R Hintz

Maureen Fagan

James D Harrison

Affiliations

Soon will be listed here.

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.

Citing Articles

Use of CatBoost algorithm to identify the need for surgery in infants with necrotizing enterocolitis.

Jin X, Sun W, Li Y, Su Y, Xu L, Zhu X Front Pediatr. 2025; 13:1465278.

PMID: 40061422 PMC: 11885510. DOI: 10.3389/fped.2025.1465278.

Development of a parent decision support tool for surgical necrotising enterocolitis: a study protocol.

Verhoeven R, Kooi E, Obermann-Borst S, Geurtzen R, Labrie N, Verhagen A BMJ Open. 2024; 14(12):e087939.

PMID: 39653566 PMC: 11628991. DOI: 10.1136/bmjopen-2024-087939.

Bifidobacterium longum subsp infantis (EVC001) is associated with reduced incidence of necrotizing enterocolitis stage ≥2 and bloody stools in premature babies.

Sohn K, Palacios V, Clark R J Perinatol. 2024; .

PMID: 39643694 DOI: 10.1038/s41372-024-02188-8.

Online registry of neonatal necrotising enterocolitis in Shenzhen: protocol for a multicentre, prospective, open, observational cohort study.

Guo X, Feng J, Zhao X, Ying E, Liu D, Tu H BMJ Open. 2024; 14(11):e091290.

PMID: 39581716 PMC: 11590832. DOI: 10.1136/bmjopen-2024-091290.

Endogenous Hyaluronan Promotes Intestinal Homeostasis and Protects against Murine Necrotizing Enterocolitis.

Eckert J, Moshal K, Burge K, Wilson A, Chaaban H Cells. 2024; 13(14.

PMID: 39056761 PMC: 11274784. DOI: 10.3390/cells13141179.

References

Shah T, Meinzen-Derr J, Gratton T, Steichen J, Donovan E, Yolton K . Hospital and neurodevelopmental outcomes of extremely low-birth-weight infants with necrotizing enterocolitis and spontaneous intestinal perforation. J Perinatol. 2011; 32(7):552-8. PMC: 3496418. DOI: 10.1038/jp.2011.176. View

Jammeh M, Adibe O, Tracy E, Rice H, Clark R, Smith P . Racial/ethnic differences in necrotizing enterocolitis incidence and outcomes in premature very low birth weight infants. J Perinatol. 2018; 38(10):1386-1390. DOI: 10.1038/s41372-018-0184-x. View

Han S, Knell J, Henry O, Riley H, Hong C, Staffa S . Long-term outcomes of severe surgical necrotizing enterocolitis. J Pediatr Surg. 2020; 55(5):848-851. DOI: 10.1016/j.jpedsurg.2020.01.019. View

Pike K, Brocklehurst P, Jones D, Kenyon S, Salt A, Taylor D . Outcomes at 7 years for babies who developed neonatal necrotising enterocolitis: the ORACLE Children Study. Arch Dis Child Fetal Neonatal Ed. 2012; 97(5):F318-22. DOI: 10.1136/fetalneonatal-2011-300244. View

Sharma A, Duc N, Luu Lam Thang T, Nam N, Ng S, Abbas K . A Consensus-Based Checklist for Reporting of Survey Studies (CROSS). J Gen Intern Med. 2021; 36(10):3179-3187. PMC: 8481359. DOI: 10.1007/s11606-021-06737-1. View

Adams-Chapman I . Necrotizing Enterocolitis and Neurodevelopmental Outcome. Clin Perinatol. 2018; 45(3):453-466. DOI: 10.1016/j.clp.2018.05.014. View

Cuna A, Sampath V, Khashu M . Racial Disparities in Necrotizing Enterocolitis. Front Pediatr. 2021; 9:633088. PMC: 7930220. DOI: 10.3389/fped.2021.633088. View

Goldstein G, Pai V, Liu J, Sigurdson K, Vernon L, Lee H . Racial/ethnic disparities and human milk use in necrotizing enterocolitis. Pediatr Res. 2020; 88(Suppl 1):3-9. PMC: 8087165. DOI: 10.1038/s41390-020-1073-5. View

Hickey M, Georgieff M, Ramel S . Neurodevelopmental outcomes following necrotizing enterocolitis. Semin Fetal Neonatal Med. 2018; 23(6):426-432. DOI: 10.1016/j.siny.2018.08.005. View

10.

Bradley E, Curry L, Devers K . Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007; 42(4):1758-72. PMC: 1955280. DOI: 10.1111/j.1475-6773.2006.00684.x. View

11.

Hong C, Fullerton B, Mercier C, Morrow K, Edwards E, Ferrelli K . Growth morbidity in extremely low birth weight survivors of necrotizing enterocolitis at discharge and two-year follow-up. J Pediatr Surg. 2018; 53(6):1197-1202. DOI: 10.1016/j.jpedsurg.2018.02.085. View

12.

Murthy K, Yanowitz T, DiGeronimo R, Dykes F, Zaniletti I, Sharma J . Short-term outcomes for preterm infants with surgical necrotizing enterocolitis. J Perinatol. 2014; 34(10):736-40. DOI: 10.1038/jp.2014.153. View

13.

Anderson J, Rogers E, Baer R, Oltman S, Paynter R, Partridge J . Racial and Ethnic Disparities in Preterm Infant Mortality and Severe Morbidity: A Population-Based Study. Neonatology. 2017; 113(1):44-54. DOI: 10.1159/000480536. View

14.

Jones I, Hall N . Contemporary Outcomes for Infants with Necrotizing Enterocolitis-A Systematic Review. J Pediatr. 2020; 220:86-92.e3. DOI: 10.1016/j.jpeds.2019.11.011. View

15.

Stoll B, Hansen N, Adams-Chapman I, Fanaroff A, Hintz S, Vohr B . Neurodevelopmental and growth impairment among extremely low-birth-weight infants with neonatal infection. JAMA. 2004; 292(19):2357-65. DOI: 10.1001/jama.292.19.2357. View

16.

Fullerton B, Hong C, Velazco C, Mercier C, Morrow K, Edwards E . Severe neurodevelopmental disability and healthcare needs among survivors of medical and surgical necrotizing enterocolitis: A prospective cohort study. J Pediatr Surg. 2017; . DOI: 10.1016/j.jpedsurg.2017.10.029. View

17.

Sjoberg Bexelius T, Ahle M, Elfvin A, Bjorling O, Ludvigsson J, Andersson R . Intestinal failure after necrotising enterocolitis: incidence and risk factors in a Swedish population-based longitudinal study. BMJ Paediatr Open. 2019; 2(1):e000316. PMC: 6307589. DOI: 10.1136/bmjpo-2018-000316. View