Kraus E M, Brettler D B
New England Area Comprehensive Hemophilia Center, Worcester Memorial Hospital, Massachusetts 01605.
Am J Med Genet. 1988 Oct;31(2):259-67. doi: 10.1002/ajmg.1320310202.
Thirty-five mothers of children with hemophilia were studied in order to ascertain the impact of hemophilia on family planning. Attitudes about reproductive risks and prenatal diagnosis were also examined. The most important factors influencing family planning in this group were parental fulfillment and availability of medical care and education for their affected child. Although 79% of mothers viewed their reproductive risk as moderate to very high, 57% indicated that their reproductive plans had not changed even with this knowledge. While 43% of the group would consider prenatal diagnosis, only 17% would terminate a pregnancy if the fetus was found to have hemophilia. Of those interested in prenatal diagnosis, the majority were interested in knowing if the fetus was affected but would not consider termination of the pregnancy. The majority of mothers in the group did not view having a child with hemophilia as an insurmountable burden on their lives. Therefore, the disease appeared to have little impact on family planning.
为了确定血友病对计划生育的影响，对35位血友病患儿的母亲进行了研究。同时也调查了她们对生殖风险和产前诊断的态度。影响该组计划生育的最重要因素是父母的成就感以及为患病子女提供医疗护理和教育的条件。尽管79%的母亲认为她们的生殖风险为中度到非常高，但57%的母亲表示，即便了解这些情况，她们的生育计划也没有改变。虽然该组中有43%的母亲会考虑产前诊断，但如果发现胎儿患有血友病，只有17%的母亲会终止妊娠。在对产前诊断感兴趣的母亲中，大多数人只是想知道胎儿是否患病，但不会考虑终止妊娠。该组中的大多数母亲并不认为生育一个患有血友病的孩子是她们生活中无法克服的负担。因此，这种疾病似乎对计划生育影响不大。
