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年轻女性对乳腺癌风险和基因检测的信息及支持需求:为新人群调整有效干预措施。

Information and support needs of young women regarding breast cancer risk and genetic testing: adapting effective interventions for a novel population.

作者信息

O'Neill Suzanne C, Evans Chalanda, Hamilton Rebekah J, Peshkin Beth N, Isaacs Claudine, Friedman Sue, Tercyak Kenneth P

机构信息

Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC, 20007, USA.

Armour Academic Center, College of Nursing, Rush University, 600 S. Paulina Street, Suite 1080, Chicago, IL, 60612, USA.

出版信息

Fam Cancer. 2018 Jul;17(3):351-360. doi: 10.1007/s10689-017-0059-x.

Abstract

Young women from hereditary breast and ovarian cancer (HBOC) families face a unique set of challenges in managing their HBOC risk, where obtaining essential information to inform decision making is key. Previous work suggests that this need for specific health information also comes at a time of heightened distress and greater individuation from family. In this report, we describe our adaptation of a previously-studied behavioral intervention for this population, utilizing a systematic approach outlined by the Centers for Disease Control and Prevention. First, we assessed the information needs and levels of distress in this population and correlates of this distress. These data then were used to inform the adaptation and piloting of a three-session telephone-based peer coaching intervention. One hundred young women (M age = 25 years) who were first or second degree relatives of BRCA1/2 mutation carriers participated. Sixty-three percent of the sample endorsed unmet HBOC information needs and they, on average, reported moderate levels of cancer-related distress (M = 21.9, SD = 14.6). Greater familial disruption was associated with greater cancer-related distress in multivariable models (p < .05). Ten women who participated in the survey completed the intervention pilot. They reported lower distress from pre- to post- (15.8 vs. 12.0), as well as significantly lower decisional conflict (p < .05) and greater endorsement of an array of healthy coping strategies (i.e., active coping, instrumental coping, positive reframing, planning, p's < .05). Our survey results suggest that young adult women from HBOC families have unmet cancer genetic information and support needs. Our pilot intervention was able to reduce levels of decisional conflict and promote the use of effective coping strategies. This approach needs to be further tested in a larger randomized trial.

摘要

来自遗传性乳腺癌和卵巢癌(HBOC)家族的年轻女性在管理自身HBOC风险上面临着一系列独特的挑战,而获取关键信息以指导决策至关重要。先前的研究表明,对特定健康信息的需求也出现在痛苦加剧且与家庭的个体化程度更高的时期。在本报告中,我们描述了针对这一人群对先前研究的行为干预措施的调整,采用了疾病控制与预防中心概述的系统方法。首先,我们评估了该人群的信息需求、痛苦程度以及这种痛苦的相关因素。这些数据随后被用于为基于电话的三阶段同伴辅导干预措施的调整和试点提供信息。100名作为BRCA1/2突变携带者一级或二级亲属的年轻女性(平均年龄 = 25岁)参与其中。63%的样本认可未满足的HBOC信息需求,她们平均报告了中度的癌症相关痛苦(M = 21.9,标准差 = 14.6)。在多变量模型中,更大的家庭破裂与更高的癌症相关痛苦相关(p < 0.05)。10名参与调查的女性完成了干预试点。她们报告从干预前到干预后痛苦程度降低(15.8对12.0),决策冲突也显著降低(p < 0.05),并且对一系列健康应对策略(即积极应对、工具性应对、积极重新构建、计划,p值均 < 0.05)的认可度更高。我们的调查结果表明,来自HBOC家族的年轻成年女性有未满足的癌症遗传信息和支持需求。我们的试点干预能够降低决策冲突水平并促进有效应对策略的使用。这种方法需要在更大规模的随机试验中进一步测试。

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