Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial.

Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial.
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DOI:
10.2196/23839
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发表时间:
2021-06-08
影响因子:
7.4
通讯作者:
Crew K
Crew K
中科院分区:
医学2区
文献类型:
--
作者:
Jones T;Guzman A;Silverman T;Freeman K;Kukafka R;Crew K

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选择性雌激素受体调节剂和芳香酶抑制剂等化学预防药物已被证明可以有效降低高危女性的乳腺癌风险 41% 至 79%。患乳腺癌的高风险女性面临着是否服用选择性雌激素受体调节剂或芳香酶抑制剂来进行乳腺癌化学预防的复杂决定。 RealRisks 是一种以患者为中心、基于网络的决策辅助 (DA),旨在促进对乳腺癌风险的了解,并让不同的女性参与规划有关采取化学预防的偏好敏感决策过程。本研究旨在了解罹患乳腺癌高风险女性对使用 RealRisks(旨在促进乳腺癌化学预防的采用的 DA)的体验的看法,并了解她们的信息需求。我们完成了一项随机对照试验,招募了 300 名具有乳腺癌高风险的不同种族和民族的女性,这些女性被分配单独学习标准教育材料或将此类材料与 RealRisks 结合使用。我们对参与随机对照试验干预组的 21 名高危女性进行了半结构化访谈,她们最初使用该工具(平均提前 1 年),以了解她们如何与该工具互动。所有采访均进行录音、逐字转录,并与数字录音进行比较,以确保内容的准确性。我们使用内容分析来生成主题。 21 名参与者的平均年龄为 58.5 (SD 10.1) 岁。参与者为 5% (1/21) 亚裔、24% (5/21) 黑人或非裔美国人、71% (15/21) 白人; 10% (2/21) 的参与者是西班牙裔或拉丁裔。所有参与者在获得 DA 访问权限后均报告使用 RealRisks。定性分析中总共出现了 4 个总体主题:干预措施的可接受性、发展议程中特别认可的要素、改进建议以及信息需求。所有女性都认为 RealRisks 可以接受并认为它有帮助(21/21,100%)。大多数女性 (13/21, 62%) 表示 RealRisks 易于浏览、用户友好且易于在网络上访问。大多数女性 (18/21, 86%) 认为 RealRisks 提高了她们对乳腺癌风险和化学预防选择的了解,并且 RealRisks 告知她们 (17/21, 81%) 是否采取化学预防的决定。一些女性(9/21,43%)分享了改进建议,因为她们希望根据用户特征进行更多定制,认为 DA 通过使用图画小说风格的叙述来针对一小部分西班牙裔或拉丁裔人群,想要更容易理解的术语,并认为该工具非常重视化学预防药物。这项定性研究证明了基于网络的 RealRisks DA 在不同的高风险女性群体中的可接受性,并提供了一些改进建议。
Chemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41% to 79% in high-risk women. Women at high risk of developing breast cancer face the complex decision of whether to take selective estrogen receptor modulators or aromatase inhibitors for breast cancer chemoprevention. RealRisks is a patient-centered, web-based decision aid (DA) designed to promote the understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision making about taking chemoprevention. This study aims to understand the perceptions of women at high risk of developing breast cancer regarding their experience with using RealRisks—a DA designed to promote the uptake of breast cancer chemoprevention—and to understand their information needs. We completed enrollment to a randomized controlled trial among 300 racially and ethnically diverse women at high risk of breast cancer who were assigned to standard educational materials alone or such materials in combination with RealRisks. We conducted semistructured interviews with a subset of 21 high-risk women enrolled in the intervention arm of the randomized controlled trial who initially accessed the tool (on average, 1 year earlier) to understand how they interacted with the tool. All interviews were audio recorded, transcribed verbatim, and compared with digital audio recordings to ensure the accuracy of the content. We used content analysis to generate themes. The mean age of the 21 participants was 58.5 (SD 10.1) years. The participants were 5% (1/21) Asian, 24% (5/21) Black or African American, and 71% (15/21) White; 10% (2/21) of participants were Hispanic or Latina. All participants reported using RealRisks after being granted access to the DA. In total, 4 overarching themes emerged from the qualitative analyses: the acceptability of the intervention, specifically endorsed elements of the DA, recommendations for improvements, and information needs. All women found RealRisks to be acceptable and considered it to be helpful (21/21, 100%). Most women (13/21, 62%) reported that RealRisks was easy to navigate, user-friendly, and easily accessible on the web. The majority of women (18/21, 86%) felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options and that RealRisks informed their (17/21, 81%) decision about whether or not to take chemoprevention. Some women (9/21, 43%) shared recommendations for improvements, as they wanted more tailoring based on user characteristics, felt that the DA was targeting a narrow population of Hispanic or Latina by using graphic novel–style narratives, wanted more understandable terminology, and felt that the tool placed a strong emphasis on chemoprevention drugs. This qualitative study demonstrated the acceptability of the RealRisks web-based DA among a diverse group of high-risk women, who provided some recommendations for improvement.
DOI: 10.1177/1049732305276687
发表时间: 2005-11-01
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