Exciting collaboration will help change gastroschisis outcomes!

Earlier this year we collaborated with Cincinnati Children’s Hospital and Texas Children’s Hospital for a study on the long term outcomes of our adult survivors. Initial findings were compiled into an abstract submitted to the American Pediatric Surgical Association to be potentially selected for presentation and the annual conference. To our greatest honor, the abstract was selected for presentation out of over 500+ submitted!

Gastrointestinal Morbidity in adults following repair of simple neonatal Gastroschisis

Abstract

Purpose: Infants born with simple gastroschisis have not been previously reported to have long term gastrointestinal morbidity. The purpose of this study is to evaluate gastrointestinal morbidity in patients at least 12 years s/p repair of simple gastroschisis.

Methods: An electronic survey was created to collect demographic information, neonatal medical and surgical history, and current health status. Subjects were recruited from July 2018 – September 2018 through a national gastroschisis network. Subjects age 12 or older were included. Respondents with complex gastroschisis (any gastrointestinal surgery before one year of age) or with unknown surgical history were excluded. QoL was assessed with the 12-item Short Form Health Survey (SF-12). Univariate analysis was done using Kruskal-Wallis test. A p-value <0.05 was considered statistically significant.

Results: A total of 77 respondents with simple gastroschisis were enrolled. 75.3% were female. The mean age was 27.7±10.7 years. 42/77 (54%) required additional surgery following their neonatal repair, with 7/42 (17%) undergoing bowel resection. 50/77 (65%) experienced at least one gastrointestinal symptom during the previous month. Abdominal pain was the most common (45%), followed by constipation (43%) and abdominal bloating (35%). 17/50 (35%) of these individuals were symptom free until 6 years of age when they experienced their first gastrointestinal symptom(s).  58 participants completed the SF-12 survey. Physical scores were within normal range, but mental scores were significantly lower in subjects who experienced gastrointestinal symptoms when compared to the general population (43.1±13.6, p<0.01) (Table 1).

Conclusion: Over half of patients with simple gastroschisis will require additional surgery after their initial repair, with one-sixth of these patients requiring bowel resection. Almost two-thirds of patients report gastrointestinal symptoms which negatively impacts their quality of life. These data support developing prospective registries to more accurately determine long term outcome, and strategies to decrease morbidity in children with gastroschisis.

Table 1.

Yes

No

p-value

Abdominal pain, mean (SD)

39.5 (13.5)

46.8 (12.9)

p<0.04

Nausea, mean (SD)

34.4 (11)

45.7 (13.2)

p<0.01

Constipation, mean (SD)

39.0 (12.6)

47 (13.5)

p<0.02

*Adults only (n = 58), general population is represented by scores of 50±10

We are deeply grateful for the support of our community and the clinicians committed to improving outcomes:

Gillian Goddard1, MD; Justine Marchix1, PhD; Meghan Hall Rauen3, MA; Mary L. Brandt2, MD; Michael Helmrath1, MD

1. Division of Pediatric General and Thoracic Surgery, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH

2. Division of Pediatric Surgery, Michael E. DeBakey Department of Surgery, Baylor College of Medicine, Texas Children’s Hospital, Houston, TX

3. Avery’s Angels Gastroschisis Foundation, Raleigh, North Carolina