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Pilot study of a decision aid on BRCA1/2 genetic testing among Orthodox Jewish women
Familial Cancer ( IF 2.2 ) Pub Date : 2024-04-12 , DOI: 10.1007/s10689-024-00371-6
Meghna S. Trivedi , Haley Manley , Haeseung Yi , Thomas Silverman , Wendy K. Chung , Paul S. Appelbaum , Rebecca Starck , Isaac Schecter , Rita Kukafka , Katherine D. Crew

Introduction

Orthodox Jewish women face unique social, cultural, and religious factors that may influence uptake of BRCA1/2 genetic testing. We examined the impact of a web-based decision aid (DA) on BRCA1/2 genetic testing intention/completion among Orthodox Jewish women. We conducted a single-arm pilot study among 50 Orthodox Jewish women who were given access to a web-based DA entitled RealRisks and administered serial surveys at baseline and 1 and 6 months after exposure to the DA. Descriptive statistics were conducted for baseline characteristics and study measures. Comparisons were made to assess changes in study measures over time. Fifty Orthodox Jewish women enrolled in the study with a mean age of 43.9 years (standard deviation [SD] 14.6), 70% Modern Orthodox, 2% with personal history of breast cancer, and 68% and 16% with a family history of breast or ovarian cancer, respectively. At baseline, 27 (54%) participants intended to complete genetic testing. Forty-three participants (86%) completed RealRisks and the 1-month survey and 38 (76%) completed the 6-month survey. There was a significant improvement in BRCA1/2 genetic testing knowledge and decrease in decisional conflict after exposure to the DA. At 1 month, only 20 (46.5%) completed or intended to complete genetic testing (p = 0.473 compared to baseline). While the DA improved genetic testing knowledge and reduced decisional conflict, genetic testing intention/completion did not increase over time. Future interventions should directly address barriers to BRCA1/2 genetic testing uptake and include input from leaders in the Orthodox Jewish community.

ClinicalTrials.gov ID

NCT03624088 (8/7/18).



中文翻译:

对正统犹太妇女进行 BRCA1/2 基因检测决策辅助的试点研究

介绍

正统犹太女性面临着独特的社会、文化和宗教因素,这些因素可能会影响BRCA1/2基因检测的采用。我们研究了基于网络的决策辅助 (DA) 对正统犹太女性BRCA1/2基因检测意向/完成的影响。我们对 50 名东正教犹太妇女进行了一项单臂试点研究,她们可以访问名为RealRisks的基于网络的 DA ,并在基线以及接触 DA 后 1 个月和 6 个月进行系列调查。对基线特征和研究措施进行了描述性统计。进行比较以评估研究指标随时间的变化。参与研究的 50 名东正教犹太女性平均年龄为 43.9 岁(标准差 [SD] 14.6),其中 70% 为现代东正教女性,2% 有乳腺癌个人史,68% 和 16% 有乳腺癌家族史或卵巢癌。基线时,27 名 (54%) 参与者打算完成基因检测。 43 名参与者 (86%) 完成了RealRisks和为期 1 个月的调查,38 名参与者 (76%) 完成了 6 个月的调查。接触 DA 后,BRCA1/2基因检测知识显着提高,决策冲突减少。第 1 个月时,只有 20 人 (46.5%) 完成或打算完成基因检测( 与基线相比,p = 0.473)。虽然 DA 提高了基因检测知识并减少了决策冲突,但基因检测意图/完成情况并没有随着时间的推移而增加。未来的干预措施应直接解决BRCA1/2基因检测采用的障碍,并纳入正统犹太社区领导人的意见。

ClinicalTrials.gov ID

NCT03624088(2018 年 8 月 7 日)。

更新日期:2024-04-13
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