Fred Hutchinson Cancer Center, 1100 Fairview Ave. N, Seattle, WA, 98109, USA.
University of Illinois Cancer Center, 818 S. Wolcott Ave MC 709 SRH, Chicago, IL, 60612, USA.
BMC Health Serv Res. 2022 Jun 25;22(1):826. doi: 10.1186/s12913-022-08193-x.
Despite the benefits of genetic counseling and testing, uptake of cancer genetic services is generally low and Black/African American (Black) women are substantially less likely to receive genetic services than non-Hispanic White women. Our team developed a culturally sensitive, narrative decision aid video to promote uptake of genetic counseling among Black women at risk for a hereditary breast cancer syndrome that can be incorporated in conjunction with population-based cancer risk assessment in a clinical setting. We report here a pilot study to demonstrate changes in intention to access genetic counseling and intervention satisfaction.
Black women who were personally unaffected by breast cancer and were recommended for genetic counseling based on family history screening in a mammography center were recruited at the time of the mammogram. A prospective, pre-post survey study design, guided by theoretical constructs, was used to evaluate baseline and immediate post-intervention psychosocial factors, including intention to participate in genetic counseling and intervention satisfaction.
Pilot recruitment goals were met (n = 30). Pre-intervention, 50% of participants indicated that they were extremely likely to make a genetic counseling appointment, compared with 70% post-intervention (p = 0.05). After watching the intervention, 50% of participants indicated that the video changed their mind regarding genetic counseling.
This study demonstrated cultural satisfaction with a decision aid intervention designed to motivate Black women with hereditary breast cancer risk to attend a genetic counseling appointment. Our study showed that intention may be a specific and key construct to target in interventions designed to support decision-making about genetic services. Study results informed the design of a subsequent large scale, randomized implementation study.
Trial registration: Clinicaltrials.gov NCT04082117 . Registered September 9, 2019. Retrospectively registered.
尽管遗传咨询和检测有其益处,但癌症遗传服务的利用率普遍较低,且黑种人/非裔美国女性接受遗传服务的可能性明显低于非西班牙裔白人女性。我们的团队开发了一种文化敏感型、叙事决策辅助视频,以促进有遗传性乳腺癌综合征风险的黑种女性接受遗传咨询,该视频可与临床环境中的基于人群的癌症风险评估相结合。我们在此报告一项试点研究,以展示对获取遗传咨询的意向和干预满意度的变化。
在乳腺摄影中心进行乳腺癌家族史筛查后,建议有遗传咨询的黑种女性在进行乳房 X 光检查时参加研究。采用前瞻性、前后测设计,以理论构建为指导,评估基线和即时干预后的社会心理因素,包括参与遗传咨询的意向和干预满意度。
试点招募目标已达成(n=30)。在干预前,有 50%的参与者表示他们非常有可能预约遗传咨询,而在干预后,这一比例为 70%(p=0.05)。在观看干预视频后,有 50%的参与者表示该视频改变了他们对遗传咨询的看法。
本研究证明了一种决策辅助干预措施在激励有遗传性乳腺癌风险的黑种女性参加遗传咨询预约方面具有文化上的满意度。我们的研究表明,意向可能是设计支持遗传服务决策的干预措施的一个特定且关键的目标。研究结果为随后的大规模随机实施研究提供了设计依据。
Clinicaltrials.gov NCT04082117。于 2019 年 9 月 9 日注册。回顾性注册。