Long-Term Outcomes and Life-Impacts of Necrotizing Enterocolitis: A Survey of Survivors and Parents

Necrotizing enterocolitis (NEC) is a devastating intestinal disease that affects approximately 3-9% of infants born prematurely (<37 weeks gestation) each year in the United States1. In a systematic literature review completed between 2010 and 2018, the overall mortality rate of known NEC (Bell Stage 2a+) was reported to be 23.5% with higher rates for infants of very low birth weight (VLBW, ≤ 1500g) or up to 30.1%, and rising to just over 50% for infants who had surgical NEC and of extremely low birth weight (ELBW, ≤1000g)2. Since many infants with NEC require surgery, there is a significant morbidity burden on survivors including, but not limited to, short bowel syndrome (SBS), inadequate digestion, and poor growth.3 Interventions often include laparotomy, peritoneal drain placement, extended bowel rest with total parenteral nutrition, respiratory support, and intravenous antibiotics that often lead to prolonged hospitalization.

While NEC is a life-altering diagnosis, the current literature and our understanding of the disease mostly reflect the outcomes of NEC during birth hospitalization or at follow-up that ends around 2-3 years of age, with prior studies focused on poor growth and intestinal failure 4, 5, 6 or neurodevelopmental outcomes between 18 months and three years.7, 8, 9

Among limited studies examining the effect of NEC on long-term complications and quality of life after two years of age, Pike et al. found an increased risk of functional impairment and bowel problems at seven years of age in children in the UK who survived known or suspected NEC (n=40), although there was no behavior or educational associations.10

There is an urgent need for an increased understanding of the long-term complications of NEC, with a specific focus on the outcomes that are of most importance to adult survivors and the parents of young NEC survivors. Such information has the potential to guide discussions about prognosis and treatment, as well as improve communication about the potential long-term outcomes of NEC between survivors, parents, and healthcare providers. This information is especially relevant to NEC survivors in consideration of disability support and social support in educational settings. This study seeks to examine the long-term outcomes and impact on physical and mental health, social experiences, and quality of life (QOL) as self-reported by NEC survivors and the parents of children with NEC. To our knowledge, this is the first study to survey NEC survivors and parents about long-term complications and impacts of NEC on QOL.

The NEC Society is a 501(c)(3) non-profit organization dedicated to building a world without NEC by advancing research, advocacy, and education. Families who have been personally affected by NEC lead the NEC Society's work and drive the organization's priorities in partnership with influential NEC researchers. Through an Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI), the NEC Society provided support for adult NEC survivors to participate in the 2019 NEC Symposium. The Symposium attracted over 200 participants from eight countries, including clinicians, researchers, and patient-families. The NEC Society recognizes the power of integrating the patient-family voice in scientific conferences. Throughout the conference, participating NEC survivors shared their experiences growing up and living with complications of NEC. They described feeling doubted, disregarded, and isolated. Here is a powerful quote from a NEC survivor at the NEC Symposium: "The long-term effects of NEC are often delegitimized, which harms my ability to access what I need for my health. Not every NEC survivor meets the SBS (short bowel syndrome) criteria, so we're left with something that is treated like it doesn't exist." During the conference, adult NEC survivors and NICU clinicians participated in a workgroup session focused on empowering patient-families. This session offered a rare opportunity for NICU clinicians to hear directly from patients living with long-term complications of NEC. The participating NEC survivors highlighted how NEC not only continues to affect their health but also how NEC has affected their families’ well-being over the years. They disclosed how their parents often had to become fiercely vigilant and assertive to ensure basic access to care and support. Their voices compelled the NEC Society to reflect upon the scarcity of publications focused on understanding the life experiences of NEC survivors and led to the launch of this research project.

Current follow-up studies on NEC survivors are performed at young ages and thus may not fully reflect the lived experiences of patients and their families. Longitudinal follow-up studies beyond preschool age can better inform the long-term outcomes and life impacts of NEC. Therefore, we aimed to characterize how NEC affects survivors and families long-term, including their QOL, mental and physical health, and social experiences.

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