Frybova Barbora, Kokesova Alena, Zemkova Daniela, Mixa Vladimir, Vlk Radovan, Rygl Michal
Department of Paediatric Surgery, 2nd Faculty of Medicine, Charles University in Prague and Motol University Hospital, Prague, Czech Republic.
Department of Paediatrics, 2nd Faculty of Medicine, Charles University in Prague and Motol University Hospital, Prague, Czech Republic.
Biomed Pap Med Fac Univ Palacky Olomouc Czech Repub. 2017 Mar;161(1):75-79. doi: 10.5507/bp.2016.059. Epub 2016 Dec 13.
To evaluate long-term quality of life and somatic growth of patients with gastroschisis and compare them with the general population.
We performed a questionnaire survey of the quality of life of our patients treated between 2004-2012.
A questionnaire was sent to our 56 patients with gastroschisis, 38 mothers of patients (68%) responded to the questionnaire. 33 of 38 mothers claim that the quality of life of their child is very good, 4 of them responded that it is good. 1 mother confessed that the quality of life was very poor. Anthropometric data show comparable results with the standard population except for patients of 1 year of age who still have lower weight (P<0.001) and body height in the 5th percentile and patients of 3 years of age who are also significantly thinner. 13% of patients in our study group have gastrointestinal problems. 9 patients (24%) attend follow-up at the neurological center (Attention Deficit Hyperactivity Disorder n=6, mental retardation n=1, dysarthria n=2), however, overall intellectual abilities are within normal range. 7 patients underwent surgery for umbilical (n=3) or inguinal hernia (n=4), 2 patients were operated on for undescended testicles, 3 patients were operated on for an adhesive ileus. 92% of mothers are very satisfied with the cosmetic result of the scar.
The study has shown that the majority of patients after operation of gastroschisis have a very good quality of life without limitation in comparison with the general population. The presented anthropometric data confirm that the development of patients with gastroschisis is favourable.
评估腹裂患者的长期生活质量和身体生长情况，并与普通人群进行比较。
我们对2004年至2012年期间接受治疗的患者进行了生活质量问卷调查。
向我们的56例腹裂患者发送了问卷，38位患者母亲（68%）回复了问卷。38位母亲中有33位称其孩子的生活质量非常好，4位称生活质量良好。1位母亲承认生活质量非常差。人体测量数据显示，除1岁患者体重仍较低（P<0.001）且身高处于第5百分位，以及3岁患者明显更瘦外，与标准人群的结果相当。我们研究组中13%的患者有胃肠道问题。9例患者（24%）在神经科中心接受随访（注意缺陷多动障碍n = 6，智力发育迟缓n = 1，构音障碍n = 2），然而，总体智力能力在正常范围内。7例患者接受了脐疝（n = 3）或腹股沟疝（n = 4）手术，2例患者接受了隐睾手术，3例患者接受了粘连性肠梗阻手术。92%的母亲对疤痕的美容效果非常满意。
研究表明，与普通人群相比，大多数腹裂手术后的患者生活质量非常好，没有限制。所呈现的人体测量数据证实腹裂患者的发育情况良好。
