The George Washington University School of Medicine and Health Sciences, Washington, DC.
University of Maryland School of Medicine, Baltimore, MD.
J Pediatr. 2020 Aug;223:178-182.e2. doi: 10.1016/j.jpeds.2020.04.027. Epub 2020 Jun 22.
To evaluate awareness of and attitudes toward preimplantation genetic testing (PGT) for sickle cell disease (SCD) among parents of children with SCD.
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.
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.
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.
评估患有镰状细胞病 (SCD) 的儿童的父母对 SCD 胚胎植入前遗传学检测 (PGT) 的认知和态度。
在常规 SCD 临床就诊前，向 SCD 患儿的父母提供一份关于 PGT 的教育手册。就诊后，父母被要求完成一份匿名调查。
在接触的 83 位家长中，有 67 位（81%）完成了调查。在 67 位家长中，仅有 16 位（24%）之前了解过 SCD 的 PGT。在我们的基于临床的教育之后，67 位家长中有 65 位（97%）表示，SCD 患儿的父母了解 PGT 非常重要或非常重要。在有生育更多孩子意向的父母中，如果保险覆盖，32 位中的 29 位（91%）个人会考虑使用 PGT。
患有 SCD 的儿童的父母通常不了解 PGT。在临床就诊时接受教育后，父母认为 PGT 的信息具有价值。儿科医生和其他医疗保健专业人员应向患有 SCD 的儿童的父母提供有关这种生殖选择的信息。
