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招募服务不足、难以接触的人群参与癌症试验:来自 2 项同性恋和双性恋前列腺癌患者康复试验的策略。

Recruiting an underserved, difficult to reach population into a cancer trial: Strategies from the 2 Rehabilitation Trial for gay and bisexual prostate cancer patients.

机构信息

Division of Epidemiology and Community Health, School of Public Health, University of Minnesota, Minneapolis, MN, USA.

Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA.

出版信息

Clin Trials. 2022 Jun;19(3):239-250. doi: 10.1177/17407745221077678. Epub 2022 Mar 1.

Abstract

BACKGROUND/AIMS: Sexual minorities are small and under-researched populations that are at disproportionate risk for cancer and poor cancer outcomes. Described as a "hidden population," the principal research challenge has been to develop effective methods to identify and recruit such cancer patients into cancer studies. Online recruitment strategies, as well as targeted clinic recruitment using patient-entered sexual orientation and gender identity data from electronic medical records have potential to transform recruitment, but studies testing the effects of how to recruit using these have not been published.

METHODS

In 2019, we conducted a naturalistic, three-arm, stratified prospective study to compare three recruitment strategies: (a) clinic based recruitment of prostate cancer patients from gay health and urology clinics; (b) directly from the gay community; and (c) online recruitment (through cancer support, sex/dating, and social sites). For each strategy, we estimated time, workload, and direct costs involved. To study how recruitment strategy may affect sampling, we tested for retention rates, demographic and outcome differences across sites. Using these methods, we successfully recruited 401 gay and bisexual prostate cancer patients into a randomized, controlled, 24-month trial testing an online sexual and urinary rehabilitation curriculum tailored for this population.

RESULTS

There were seven key results. First, it is possible to recruit substantial numbers of sexual minority men into prostate cancer studies provided online recruitment methods are used. Second, we observed big differences in dropout during study onboarding by recruitment source. Third, within online recruitment, the online sex/dating application (app) was the most successful and efficient, followed by the cancer support site, and then the social networking site. Fourth, while clinics were the cheapest source of recruitment, they were time intensive and low in yield. Fifth, the cancer support site and sex/dating app recruits differed by several characteristics, with the former being more rehabilitation-focused while the latter were younger and more sexually active. Sixth, we found almost no differences in outcomes across the three online recruitment sites. Seventh, because retention in online studies has been a concern, we confirm very low attrition at 3- and 6 months into the trial.

CONCLUSION

For sexual minority cancer research, more research on how to use sexual orientation and gender identity electronic medical record data for clinic-based recruitment is needed. For other small or hard-to-reach populations, researchers should compare and publish online versus offline recruitment strategies.

摘要

背景/目的:性少数群体是规模较小且研究不足的人群,他们罹患癌症的风险和癌症预后不良的风险不成比例。这些人群被描述为“隐藏群体”,主要的研究挑战是开发有效的方法来识别和招募这些癌症患者参与癌症研究。在线招募策略,以及利用电子病历中患者输入的性取向和性别认同数据进行有针对性的诊所招募,有可能改变招募方式,但尚未发表关于如何利用这些方法进行招募的效果的研究。

方法

2019 年,我们进行了一项自然主义、三臂、分层前瞻性研究,比较了三种招募策略:(a) 从男同性恋健康和泌尿科诊所招募前列腺癌患者;(b) 直接从男同性恋社区招募;(c) 在线招募(通过癌症支持、性/约会和社交网站)。对于每种策略,我们都估计了所涉及的时间、工作量和直接成本。为了研究招募策略如何影响抽样,我们测试了不同地点的保留率和人口统计学及结果差异。使用这些方法,我们成功地招募了 401 名男同性恋和双性恋前列腺癌患者参加一项随机、对照、24 个月的试验,该试验测试了针对该人群的在线性和尿康复课程。

结果

有七个关键结果。首先,只要使用在线招募方法,就有可能招募到大量的性少数男性进入前列腺癌研究。其次,我们观察到不同的招募来源在研究开始时的辍学率存在很大差异。第三,在线招募中,在线性/约会应用程序(app)是最成功和最有效的,其次是癌症支持网站,然后是社交网络网站。第四,虽然诊所是最便宜的招募来源,但它们需要大量的时间和低产出。第五,癌症支持网站和性/约会应用程序的招募者在多个特征上存在差异,前者更注重康复,而后者则更年轻,更活跃。第六,我们发现三个在线招募网站之间的结果几乎没有差异。第七,因为在线研究的保留率一直是一个问题,我们确认在试验的 3 个月和 6 个月时的失访率非常低。

结论

对于性少数群体癌症研究,需要进一步研究如何利用电子病历中的性取向和性别认同数据进行诊所招募。对于其他规模较小或难以接触的人群,研究人员应比较并公布在线与线下招募策略。

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