Efficient Identification and Referral of Low-Income Women at High Risk for Hereditary Breast Cancer: A Practice-Based Approach

Efficient Identification and Referral of Low-Income Women at High Risk for Hereditary Breast Cancer: A Practice-Based Approach
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DOI:
10.1159/000336419
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发表时间:
2012-01-01
影响因子:
1.7
通讯作者:
Pasick, R.
Pasick, R.
中科院分区:
医学4区
文献类型:
--
作者:
Joseph, G.;Kaplan, C.;Pasick, R.

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背景资料:查明患有罕见但严重的遗传性癌症风险的低收入妇女并将她们转介到适当的服务机构,是一项重要的公共卫生挑战。我们报告了形成性研究的结果,以达到成千上万的妇女有效地识别那些处于高风险和便捷地获得免费的遗传服务。通过强调与两个最终用户组织的干预匹配,外部有效性得到最大化,这两个最终用户组织必须连接起来才能实现这一点。该研究阶段为后续随机对照试验的设计提供了信息。方法:我们进行了一项随机对照的试点研究(n = 38),比较两种干预模式的可行性和影响。主要结果是在两个月的干预期间接受遗传咨询。模型1是基于一个学术医院遗传风险项目的通常出诊协议,模型2借鉴了全州免费电话线的筛查和转诊程序,通过该电话线可以识别出大量的高危女性。在模型1中,风险计划主动打电话给患者安排遗传咨询;对于模型2,女性被告知她们有资格接受咨询,并自己打电话。我们还开发和预先测试了一个家庭史筛选管理通过电话,以确定妇女适合遗传咨询。结果如下:在干预期间,随机分配到模型1(3/18)和模型2(3/20)的妇女接受遗传咨询的情况无统计学显著差异。然而,当模型2中无反应的妇女在2个月后被要求时,又有7名妇女获得了咨询;模型1中的4名妇女在干预后也接受了咨询。因此,干预模式,密切配合风险计划的出诊高风险妇女被认为是可行的,并带来了更多的低收入妇女免费遗传咨询。我们的筛选器很容易通过电话管理,似乎可以有效地识别高风险呼叫者。该模型和筛查仪现已在主要试验中使用,以测试这种筛查和转诊干预措施的有效性。筛选器的验证分析也在进行中。结论:确定干预战略和工具,并在最终使用这些战略和工具的背景下对其影响和效率进行系统比较,是基于实践的研究的关键要素。版权所有(c)2012 S. Karger AG,巴塞尔
Background: Identification of low-income women with the rare but serious risk of hereditary cancer and their referral to appropriate services presents an important public health challenge. We report the results of formative research to reach thousands of women for efficient identification of those at high risk and expedient access to free genetic services. External validity is maximized by emphasizing intervention fit with the two end-user organizations who must connect to make this possible. This study phase informed the design of a subsequent randomized controlled trial. Methods: We conducted a randomized controlled pilot study (n = 38) to compare two intervention models for feasibility and impact. The main outcome was receipt of genetic counseling during a two-month intervention period. Model 1 was based on the usual outcall protocol of an academic hospital genetic risk program, and Model 2 drew on the screening and referral procedures of a statewide toll-free phone line through which large numbers of high-risk women can be identified. In Model 1, the risk program proactively calls patients to schedule genetic counseling; for Model 2, women are notified of their eligibility for counseling and make the call themselves. We also developed and pretested a family history screener for administration by phone to identify women appropriate for genetic counseling. Results: There was no statistically significant difference in receipt of genetic counseling between women randomized to Model 1 (3/18) compared with Model 2 (3/20) during the intervention period. However, when unresponsive women in Model 2 were called after 2 months, 7 more obtained counseling; 4 women from Model 1 were also counseled after the intervention. Thus, the intervention model that closely aligned with the risk program's outcall to high-risk women was found to be feasible and brought more low-income women to free genetic counseling. Our screener was easy to administer by phone and appeared to identify high-risk callers effectively. The model and screener are now in use in the main trial to test the effectiveness of this screening and referral intervention. A validation analysis of the screener is also underway. Conclusion: Identification of intervention strategies and tools, and their systematic comparison for impact and efficiency in the context where they will ultimately be used are critical elements of practice-based research. Copyright (c) 2012 S. Karger AG, Basel