van Eijck Floortje C, Hoogeveen Yvonne L, van Weel Chris, Rieu Paul N M A, Wijnen Rene M H
Department of Surgery, Erasmus Medical Center, Rotterdam 3000 CA, The Netherlands.
J Pediatr Surg. 2009 Jul;44(7):1355-9. doi: 10.1016/j.jpedsurg.2008.11.034.
Long-term outcome and quality of life in omphalocele (OC) studies are mainly focused on cosmetic disorders with the abdominal scar and gastrointestinal disorders. The aim of this study was to compare long-term mortality, morbidity, and quality of life between patients with minor and giant OCs.
Records of 89 minor and 22 giant OC children were reviewed. A questionnaire on general health was sent to all patients. A second questionnaire concerning quality of life and functional status; Darthmouth COOP Functional Health Assessment Charts/WONCA (COOP/WONCA) was sent to all patients aged 18 years or older and a peer control group.
Of the surviving patients (69 minor OC, 20 giant OC), 12 were lost to hospital follow-up. The first questionnaire was returned by 64 (83%) of 77 patients. There were no significant differences in gastrointestinal disorders. Cosmetic problems were experienced significantly more in giant OC. The results of the COOP/WONCA charts indicated a good to very good quality of life in both groups comparable to the control group.
Our study indicates that after a high level of medical intervention perinatally, quality of life is good to very good in both groups and comparable to healthy young adults.
脐膨出(OC)研究中的长期结局和生活质量主要集中在腹部瘢痕的美容问题和胃肠道疾病上。本研究的目的是比较小型和大型OC患者的长期死亡率、发病率和生活质量。
回顾了89例小型OC和22例大型OC儿童的记录。向所有患者发送了一份关于总体健康状况的问卷。向所有18岁及以上的患者和一个同龄对照组发送了第二份关于生活质量和功能状态的问卷;达特茅斯COOP功能健康评估图表/世界家庭医生组织(COOP/WONCA)。
在存活的患者中(69例小型OC,20例大型OC),有12例失访。77例患者中有64例(83%)返回了第一份问卷。胃肠道疾病方面无显著差异。大型OC患者的美容问题明显更多。COOP/WONCA图表的结果表明,两组的生活质量均良好至非常好,与对照组相当。
我们的研究表明,在围产期进行高水平的医疗干预后,两组的生活质量均良好至非常好,与健康的年轻人相当。