目的 调查分析胎儿先天性肺囊性瘤围产相关因素及胎儿父母对未来新生命的期望现状。方法 通过在专业网站对超声检查确诊的胎儿肺囊腺瘤的父母发放“胎儿先天性肺囊性瘤患儿父母情况调查表”，并收集数据进行统计学分析。结果 2011年1月至2012年8月产前超声诊断为肺囊腺瘤胎儿的父母45例回收调查问卷中，有效问卷34份，有效率为76%。在围产的相关因素中，肺囊腺瘤与胎儿母亲文化程度呈正相关，并担忧患儿手术后的生活质量；统计显示正常人群基本不了解该疾病并趋向于认为患该疾病的胎儿基本都不能存活或大多不能存活；大多数正常人群认为该疾病对胎儿会有影响；71%的胎儿父母不愿终止妊娠，而相反正常人群几乎都认为应该终止妊娠，对可能存在风险的认识存在差异，并具有统计学意义。结论 大多数胎儿父母对该病的认识与正常人群存在明显差异，相关信息的了解来自网络而不是相关的医疗人员。专业网站可提供咨询服务平台，既方便患儿父母，使其得到专业的指导，又能节省大量的社会资源。
Objective To Investigate the perinatal related factors of fetal congenital cystic adenomatoid malformation (CCAM) and the expectations of fetus parents on the new life. Method The congenital cystic adenomatoid malformation parental questionnaires were issued through professional website to parents whose fetal were conformed lung cystadenoma by ultrasound , and the data was collected for statistical analysis. Results A total of 45 questionnaires were received from January 2011 to August 2012, of which 34 the questionnaire is valid, the efficiency is 76 percent. Statistical results showed positively relationship between pulmonary cystadenoma and the education degree of fetal maternal, and the fetus maternal worried about the fetal quality of life after operation. Most of general population didn’t know much about this disease. And they tended to believe that the fetus suffered from the disease cannot survive basically ,or most of them cannot survive. Most of the general population believed that the disease will have negative effect on the fetus. 71 percent of the parents with fetal CCAM didn’t want to terminate the pregnancy. On the contrary, almost all of the general population thought the mothers with fetal CCAM should terminate the pregnancy. There were significant differences in the understanding of the risks of the fetus between two groups. Conclusions There are obvious differences in the understanding of the risks of the fetus between parents with fetal CCAM and most of the general population. Their understanding of the disease-relevant information came from the network rather than the medical staff. Professional website provided consulting services. The network can provide a convenient and professional guidance for patients with fetal CCAM, and save a lot of social resources.
