Parents of Children with Sickle Cell Disease Are Interested in Preimplantation Genetic Testing
Parents of Children with Sickle Cell Disease Are Interested in Preimplantation Genetic Testing
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DOI：
10.1016/j.jpeds.2020.04.027
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发表时间：
2020-08-01
影响因子：
5.1
通讯作者：
Nickel, Robert Sheppard
中科院分区：
文献类型：
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作者：
Attia, Monica;Kripalani, Shawn;Nickel, Robert Sheppard
目的了解镰状细胞病（SCD）患儿父母对植入前基因检测（PGT）的认知和态度。研究设计：在常规SCD门诊就诊前，向SCD患儿父母提供PGT教育手册。在他们的诊所访问后，父母被要求完成一个匿名的survey.Results的83个专利接近，67（81%）完成了调查。67名父母中只有16名（24%）以前知道SCD的PGT。在我们的临床教育后，67位家长中有65位（97%）表示SCD患儿家长了解PGT很重要或非常重要。在有兴趣有更多的孩子的父母，29 32（91%）会亲自考虑使用PGT，如果保险覆盖。结论父母的儿童SCD一般不知道PGT。当在诊所接受教育时，家长认为PGT的信息很有价值。儿科医生和其他卫生保健专业人员应告知SCD儿童的父母这种生殖选择。
Objective To evaluate awareness of and attitudes toward preimplantation genetic testing (PGT) for sickle cell disease (SCD) among parents of children with SCD.Study design Parents of children with SCD were given an educational handbook on PGT before a routine SCD clinic visit. After their clinic visit, parents were asked to complete an anonymous survey.Results Of 83 patents approached, 67 (81%) completed the survey. Only 16 of the 67 parents (24%) were previously aware of PGT for SCD. After our clinic-based education, 65 of the 67 parents (97%) indicated that it was important or very important for parents of children with SCD to know about PGT. Among parents interested in having more children, 29 of 32 (91%) would personally consider using PGT if covered by insurance.Conclusions Parents of children with SCD are generally not aware of PGT. When educated in clinic, parents viewed information on PGT as valuable. Pediatricians and other health care professionals should inform parents of children with SCD about this reproductive option.