Quality of life after necrotizing enterocolitis: an integrative review

This is an integrative review, conducted by searching the literature in the following databases: Virtual Health Library (BVS), Latin American and Caribbean Health Sciences Literature (LILACS), Medical Literature Analysis and Retrieval System Online (MEDLINE), and PubMed, using Health Sciences Descriptors (DeCS): “necrotizing enterocolitis,” “quality of life,” and “prognosis” combined with the Boolean operators AND and OR: “quality of life” OR “prognosis.” Inclusion criteria were: publication period between 2012 and 2022.

Data synthesis:

A total of 1,010 studies were located, of which ten were selected to comprise the bibliographic sample of this review. Children with NEC are prone to exhibit cognitive neurological impairment, especially those who undergo surgical procedures due to more severe conditions. Motor development was considered below average when compared to healthy children, with more noticeable delays in fine and gross motor function development. The search for the relationship between NEC and quality of life revealed that this condition has a negative impact on the well-being of affected individuals.

Conclusions:

NEC has proven to be a serious condition contributing to high rates of morbidity and mortality in newborns, potentially leading to a reduction in the quality of life of affected patients.

Keywords:
Necrotizing enterocolitis; Quality of life; Infant, newborn

Authors	Study design and location	Sample	Main results and conclusions
Neam et al.¹⁷17. Neam VC, Oron AP, Nair D, Edwards T, Horslen SP, Javid PJ. Factors associated with health-related quality of life in children with intestinal failure. J Pediatrics. 2020;216:13-18.e1. https://doi.org/10.1016/j.jpeds.2019.08.049 https://doi.org/10.1016/j.jpeds.2019.08....	Seattle, United States Prospective study	Families of 91 children > 6 years (26 with NEC).	The quality of life of children with intestinal failure is lower when compared to the healthy population. This reduction in quality of life was found to be greater in school-age children.
Muto et al.¹³13. Muto M, Sugita K, Ibara S, Masuya R, Matuskubo M, Kawano T, et al. Discrepancy between the survival rate and neuropsychological development in postsurgical extremely low-birth-weight infants: a retrospective study over two decades at a single institution. Pediatr Surg Int. 2021;37:411-7. https://doi.org/10.1007/s00383-020-04825-7 https://doi.org/10.1007/s00383-020-04825...	Japan Retrospective Chart Review	82 cases of low birth weight newborns who underwent laparotomy due to NEC, FIP, and MRI	Delays in the development of fine and gross motor functions were more noticeable when compared to other functions. Showing a tendency for postural-motor decline between 1.5 and 3 years
Han et al.²⁰20. Han SM, Knell J, Henry O, Riley H, Hong CR, Staffa SJ, et al. Long-term outcomes of severe surgical necrotizing enterocolitis. J Pediatric Surg. 2020;55:848-51. https://doi.org/10.1016/j.jpedsurg.2020.01.019 https://doi.org/10.1016/j.jpedsurg.2020....	Boston, United States Prognostic study	268 infants with surgical NEC.	There was higher survival in patients who were not placed on unspecified comfort measures but underwent multiple surgeries. Overall survival for severe surgical NEC was 68%. Of these, 32% achieved enteral autonomy without transplantation. Of surgery survivors, 71% did not have severe neurological impairment, but dependence on PN was associated with a higher number of seizures, medications, and ongoing neurological follow-up.
Amin et al.²¹21. Amin R, Knezevich M, Lingongo M, Szabo A, Yin Z, Oldham KT, et al. Long-term quality of life in neonatal surgical disease. Ann Surg. 2018;268:497-505. https://doi.org/10.1097/SLA.0000000000002918 https://doi.org/10.1097/SLA.000000000000...	United States Prospective observational study	241 patients, of whom 23 developed NEC.	The study demonstrated a reduction in quality of life with an increase in the length of hospital stay. Those who underwent more than one surgical intervention had higher quality of life compared to those who only underwent drainage or a single-stage laparotomy. After the age of 12, quality of life is significantly impaired.
Sparks et al.¹⁹19. Sparks EA, Khan FA, Fisher JG, Fullerton BS, Hall A, Raphael BP, et al. Necrotizing enterocolitis is associated with earlier achievement of enteral autonomy in children with short bowel syndrome. J Pediatric Surg. 2016;51:92-5. https://doi.org/10.1016/j.jpedsurg.2015.10.023 https://doi.org/10.1016/j.jpedsurg.2015....	Boston, United States Comparative study	109 patients enrolled in a multidisciplinary intestinal rehabilitation program, with short bowel syndrome, among whom 37 were diagnosed with NEC.	45 patients (41%) achieved enteral autonomy after a median duration of PN of 15.3 months. Of NEC patients, 64.9% achieved enteral autonomy compared to 29.2% of patients with a different primary diagnosis. NEC patients can achieve autonomy even after extended periods of parenteral support.

Authors	Study design and location	Sample	Main results and conclusions
Mondal et al.¹⁶16. Mondal A, Misra D, Al-Jabir A, Hubail D, Ward T, Patel B. Necrotizing enterocolitis in neonates: Has the brain taken a hit 10 years later? J Pediatr Neurosci. 2021;16:30-4. https://doi.org/10.4103/jpn.JPN_41_20 https://doi.org/10.4103/jpn.JPN_41_20...	United Kingdom Retrospective review, cohort	67 infants with NEC. Of those, 46 were born alive, and 18 were contacted.	The overall mortality rate was 31%, and 61% had some form of neurological impairment. Cognitive function was the most commonly compromised, at 56%. Surgical management was a risk factor for lower quality of life. The primary areas of impairment included special educational needs, cerebral palsy, blindness, speech difficulties, and learning difficulties. This developmental delay can be attributed to prematurity.
Zozaya et al.¹⁴14. Zozaya C, Shah J, Pierro A, Zani A, Synnes A, Lee S, et al. Neurodevelopmental and growth outcomes of extremely preterm infants with necrotizing enterocolitis or spontaneous intestinal perforation. J Pediatric Surg. 2021;56:309-16. https://doi.org/10.1016/j.jpedsurg.2020.05.013 https://doi.org/10.1016/j.jpedsurg.2020....	Canada Retrospective cohort study	2,019 premature newborns (22 and 28 weeks). Of these, 61 had perforated NEC, and 115 had non-perforated NEC.	Neonates had a higher rate of dysplasia severe bronchopulmonary disease, severe retinopathy of prematurity and infections. When compared to neonates without NEC, neonates with NEC had a smaller head circumference and lower scores for motor, cognitive and language development.
Lee et al.¹⁵15. Lee I, Neil JJ, Huettner PC, Smyser CD, Rogers CE, Shimony JS, et al. The impact of prenatal and neonatal infection on neurodevelopmental outcomes in very preterm infants. J Perinatol. 2014;34:741-7. https://doi.org/10.1038/jp.2014.79 https://doi.org/10.1038/jp.2014.79...	United States Secondary retrospective analysis	155 premature infants with prenatal or neonatal infections, of whom 10 (6.5%) had NEC, and 7 (4.5%) had NEC with sepsis.	Both groups were associated with longer time on parenteral nutrition. Patients with sepsis required longer ventilation time. Neonatal infections — including NEC — are associated with structural changes in the brain, but not with neurobehavioral changes.
Lin et al.¹⁸18. Lin HJ, Shi LP, Du LZ. Long-term prognosis of neonates with necrotizing enterocolitis. Zhongguo Dang Dai Er Ke Za Zhi. 2018;20:985-9. https://doi.org/10.7499/j.issn.1008-8830.2018.12.002 https://doi.org/10.7499/j.issn.1008-8830...	China Longitudinal study	83 premature infants with NEC who survived. They were enrolled and divided into a surgical group (n=57) and a non-surgical group (n=26).	Of the infants, 37% were underweight, and the rate of weight loss in the surgical group was higher than in the non-surgical group; 27% were delayed in length and 17% lagged in head circumference; 22% had motor delay/ developmental disabilities, and the incidence rate in the surgical group was higher than in the non-surgical group (28 vs. 8%). Also, 6% were diagnosed with cerebral palsy, mostly in the surgical group.
Allendorf et al.²²22. Allendorf A, Dewitz R, Weber J, Bakthiar S, Schloesser R, Rolle U. Necrotizing enterocolitis as a prognostic factor for the neurodevelopmental outcome of preterm infants – match control study after 2 years. J Pediatric Surg. 2018;53:1573-7. https://doi.org/10.1016/j.jpedsurg.2018.01.006 https://doi.org/10.1016/j.jpedsurg.2018....	Germany Retrospective case-control study	74 participants, consisting of 37 patients with NEC. 13 in group A (NEC treated conservatively), and 24 in group B (surgically treated NEC). 37 in the control group.	Patients in group A had higher rates of psychomotor and mental development compared to group B. Healthy patients had higher rates of mental development than both groups. Group B had a longer period of parenteral nutrition and risk of cognitive delay.

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[1] *Corresponding author. brenomarques@ufba.br