Quality of Life in Children With Gastroschisis

Abstract

Research Article| September 01 2016 Quality of Life in Children With Gastroschisis AAP Grand Rounds (2016) 36 (3): 29. https://doi.org/10.1542/gr.36-3-29 Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Facebook Twitter LinkedIn MailTo Tools Icon Tools Get Permissions Cite Icon Cite Search Site Citation Quality of Life in Children With Gastroschisis. AAP Grand Rounds September 2016; 36 (3): 29. https://doi.org/10.1542/gr.36-3-29 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search toolbar search search input Search input auto suggest filter your search All PublicationsAll JournalsAAP Grand RoundsPediatricsHospital PediatricsPediatrics In ReviewNeoReviewsAAP NewsAll AAP Sites Search Advanced Search Topics: gastroschisis, quality of life Source: Carpenter JL, Wiebe TL, Cass DL, et al. Assessing quality of life in pediatric gastroschisis patients using Pediatric Quality of Life Inventory survey: An institutional study. J Pediatr Surg. 2016; 51(5): 726– 729; doi: https://doi.org/10.1016/j.jpedsurg.2016.02.012Google Scholar Investigators from the Baylor College of Medicine and Texas Children’s Hospital measured parent-reported quality of life (QoL) of children ≥2 years of age with a history of gastroschisis. Patients were eligible if they had been treated for gastroschisis at Texas Children’s Hospital from 2005–2011. Patients were identified through the hospital’s surgical database using ICD-9 codes and were categorized as simple versus complicated gastroschisis, the latter defined as gastroschisis with intestinal atresia, volvulus, necrosis and/or perforation. Demographic data were obtained through chart review. QoL data were obtained from parents through telephone administration of the Pediatric Quality of Life Inventory (PedsQL). The PedsQL measures physical, emotional, social, and school functioning for children 2–18 years old and is scored from 0–100, with healthy children having scores ranging from 75.3–99.9.1 Of 119 patients identified, 28 had QoL data and were included in analysis. The average age of patients was 5.8±2.3 years, 12 (43%) were males, and 17 (61%) had simple gastroschisis. The average PedsQL score did not differ between patients with simple and complicated gastroschisis (81.7±19.5 vs 78.8±20.1; P=.70). The investigators conclude that children born with simple or complicated gastroschisis have a similar QoL beyond 2 years of age and a QoL that is comparable to healthy children. Dr. Iqbal has disclosed no financial relationship relevant to this commentary. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device. Advancements in fetal imaging and diagnosis have provided an opportunity for families to meet with pediatric specialists prenatally and prepare for the postnatal course. In addition to the immediate management of their child, families often have questions about long-term prognosis. Historically, the literature has been robust with short-term clinical outcome for many congenital anomalies; however, only recently has there been clear recognition of the need for quality long-term outcome data to improve our ability to counsel expectant families. Gastroschisis, often diagnosed in the second trimester of pregnancy, has an estimated incidence of 1 in 2,000 live births.2 Thus, families have considerable time to contemplate the implications of having a child with gastroschisis and formulate questions for surgeons and neonatologists. Multiple prenatal visits to assess fetal well-being, particularly in the third trimester, provide an excellent opportunity for families to receive counseling. For the most part, babies with gastroschisis do very well once the bowel has been reduced and they are able to tolerate feeds. Expected mortality rate is <5% and mean duration of hospitalization in North America is between 41 and 45 days.3 These statistics are reassuring for families, but do not address concerns that they may have about the “normalcy” of their child’s life beyond the neonatal period. The results of the current study begin to... You do not currently have access to this content.