Division of General, Thoracic and Fetal Surgery, Children's Hospital of Philadelphia.
Division of General, Thoracic and Fetal Surgery, Children's Hospital of Philadelphia.
J Pediatr Surg. 2021 Aug;56(8):1365-1369. doi: 10.1016/j.jpedsurg.2020.09.008. Epub 2020 Sep 17.
To report the long-term core outcome set of patients with simple gastroschisis.
This was a retrospective chart review of all patients with simple gastroschisis managed at our hospital between August 2008 and July 2016. We collected all data included in the core outcome set developed for the standardization of gastroschisis outcomes reporting. We conducted a phone survey of the patients' parents using the PedsQL™ Pediatric Quality of Life Inventory, Cognitive Functioning Scale, and Gastrointestinal Symptoms Scale (GSS). Additionally, parents reported their subjective evaluation of the patients' cosmetic result and overall quality of life.
There were 124 patients included in the study. The majority (76.5%) was born prematurely at a median gestational age of 36 (range 27.6-38) weeks. At neonatal discharge (median 36 days [18-150] days) most patients were below the 10th percentile for height (81.4%) and weight (87%). Their growth, however, normalized during early childhood. Seven patients (5.6%) required at some point an operation for acute abdominal complications. One-third of patients required long-term treatment for constipation and one-third of patients required long-term treatment for gastroesophageal reflux disease (GERD). Thirty-five parents participated in the phone survey. Mean parent-reported quality of life score was better than healthy controls (87.5% vs. 82.3%, p = 0.049). Cognitive functions and gastrointestinal symptoms scores were similar to healthy controls. All patients are alive.
Growth restriction in patients with simple gastroschisis is common at birth and during the neonatal period, but it improves during the first three years of life. Abdominal operations are rarely needed in patients with simple gastroschisis. GERD and constipation, on the other hand, are common and often require long-term medical management. The overall parent-reported quality of life of patients with simple gastroschisis is excellent.
Level II.
报告单纯性腹裂患者的长期核心结局。
这是一项对 2008 年 8 月至 2016 年 7 月期间在我院接受治疗的所有单纯性腹裂患者进行的回顾性图表审查。我们收集了纳入腹裂结局报告标准化核心结局集的所有数据。我们使用 PedsQL™儿科生活质量量表、认知功能量表和胃肠道症状量表（GSS）对患者家长进行了电话调查。此外，家长还报告了他们对患者美容结果和整体生活质量的主观评估。
研究共纳入 124 例患者。大多数患者（76.5%）早产，中位胎龄为 36（27.6-38）周。在新生儿出院时（中位 36 天[18-150]天），大多数患者的身高（81.4%）和体重（87%）均低于第 10 百分位。然而，他们的生长在幼儿期逐渐恢复正常。7 例患者（5.6%）在某一时刻因急性腹部并发症而需要手术。三分之一的患者需要长期治疗便秘，三分之一的患者需要长期治疗胃食管反流病（GERD）。35 位家长参与了电话调查。父母报告的平均生活质量评分好于健康对照组（87.5% vs. 82.3%，p=0.049）。认知功能和胃肠道症状评分与健康对照组相似。所有患者均存活。
单纯性腹裂患者出生时和新生儿期生长受限较为常见，但在生命的前 3 年得到改善。单纯性腹裂患者很少需要腹部手术。另一方面，GERD 和便秘较为常见，且往往需要长期的药物治疗。单纯性腹裂患者的整体父母报告生活质量极佳。
二级。
