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• W2511658434 abstract "To evaluate the impact, to understand the usefulness, and to examine the relationship between risk status and reproductive outcomes of genetic counseling experiences for patients undergoing PGD. A 40 question online survey was designed using Survey Monkey with SSL encryption enabled. The results of the study will contain no identifying information. A Business Associates Agreement has been put into place to ensure HIPAA compliance. All patients undergoing genetic counseling through Reprogenetics as part of their care will be eligible to participate. Genetic counseling is mandatory for all patients with chromosomal aberrations and single gene disorders, and available to patients who undergo preimplantation genetic screening (PGS). After each genetic consult, the genetic counselor will send an email inviting patients to participate in a 15-20 minute online survey. The survey launched at the end of 4/2016 with 16 respondents, all women; 11 aneuploidy only and 5 single gene patients. Of these, 5/16 (31.3%) had previously undergone ART and 14/16 (87.5%) reported that PGS/PGD was very important for the current IVF cycle. Results showed that 75% (12/16) had genetic carrier testing and 7/16 (43.8%) had previously spoken with a genetic counselor. Compared to their previous genetic counseling experience, 6/7 (85.7%) rated this genetic counseling consult either “somewhat better” or “much better”. For respondents, 100% described the genetic counseling consult as informative, with 10/16 (62.5%) patients describing the consult as important, valuable and educational. The majority of patients, 14/16 (87.5%), reported that their biggest concern was addressed during their genetic counseling consult and would recommend genetic counseling to other patients. The majority of patients, 9/16 (56.3%), preferred telephone counseling and would not change the consult setting. Overall, the patients rated this PGS/PGD genetic counseling consult positively and would recommend this consult to other patients. Based on these results, this cohort of patients prefers telephone genetic counseling instead of in-person counseling. This allows geographically diverse patients access to genetic counseling for PGD. Additionally, prior to the PGS/PGD consult, the majority of patients have undergone genetic carrier testing, and continued to find the availability of genetic counseling beneficial during their IVF/PGD cycle. This demonstrates that genetic counseling in the PGD setting is beneficial as a whole, regardless of previous access to a genetic counselor." @default.
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• W2511658434 date "2016-09-01" @default.
• W2511658434 modified "2023-10-14" @default.
• W2511658434 title "Preimplantation genetic diagnosis (PGD) genetic counseling; but why? the patient experience" @default.
• W2511658434 doi "https://doi.org/10.1016/j.fertnstert.2016.07.1053" @default.
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