孕妇对分娩唐氏儿和羊膜腔穿刺的接受度调查

Attitudes towards Down's syndrome-affected birth and amniocentesis in Chinese pregnant women

目的本研究调查孕妇对'分娩唐氏儿'和'羊膜腔穿刺所致流产'的接受程度,以指导产前诊断和遗传咨询工作。方法在知情同意的基础上,对140例主动要求唐氏综合征筛查的孕妇(A组)及97例普通产科门诊未行唐氏综合征筛查的孕妇(B组)分别进行单独的书面问卷调查。比较两组间人口学资料的差异。采用标准博弈法量化孕妇对'羊膜腔穿刺所致流产'和'分娩唐氏儿'的接受程度,结果以效用值表示,并比较两组间差异。结果共227例(其中A组137例,B组90例)完成整个问卷调查。'分娩唐氏儿'的效用值为0.50(IQR:0.10~0.70),而'羊膜腔穿刺所致流产'的效用值为0.75(IQR:0.50~0.90),前者明显低于后者(P【0.05)。同时,提示效用值与人口学资料无关。结论孕妇对'分娩唐氏儿'比'羊膜腔穿刺所致流产'更难以接受。在进行产前筛查或诊断的临床决策时,应充分考虑孕妇本人的意愿和想法。

Objective This study was performed to investigate the preferences of Chinese pregnant women for Down syndrome-affected birth compared to invasive test-related miscarriage,using the standard gamble approach,and to investigate whether there is a difference in Utility Score between general obstetric patients and those who request prenatal screening. Methods An interviewer-administered survey was conducted on 140 women who presented to the second-trimester combined screening for fetal Down syndrome(Group A) and 90 women who presented to the General Obstetric Clinic for booking visits(Group B).Preferences for Down syndrome-affected birth compared to invasive test-related miscarriage were assessed using the standard gamble approach.The differences in Utility Scores for the two outcomes and difference in scores between the two study groups were compared.Results 227 pregnant women(137 in Group A,90 in Group B) had finished their questionnaires.There was no significant difference in any of the Utility Scores studied between the two study groups.Therefore the summary statistics were performed using the whole study population.The median Utility Score for a Down syndrome-birth was 0.50(IQR:0.10~0.70),which was significantly lower than that of 0.75(IQR:0.50~0.90) for a procedure-related miscarriage(P<0.05).Also,the Utility Scores were neither found to be associated with any particular patient demographic characteristics.Conclusion The Chinese pregnant women consider a Down syndrome-affected birth as a much worse health state and life event than a miscarriage.Clinical decision process for prenatal testing should be reconsidered to better reflect individual values and preferences.