Are cancer registries a viable tool for cancer survivor outreach? A feasibility study

Are cancer registries a viable tool for cancer survivor outreach? A feasibility study
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DOI:
10.1007/s11764-012-0259-1
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发表时间:
2013-03-01
影响因子:
3.7
通讯作者:
Vernon, Sally W.
Vernon, Sally W.
中科院分区:
医学2区
文献类型:
--
作者:
Carpentier, Melissa Y.;Tiro, Jasmin A.;Vernon, Sally W.

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对于癌症幸存者是否愿意通过癌症登记处联系以进行研究和健康促进工作,人们知之甚少。我们试图 (1) 确定乳腺癌和结直肠癌 (CRC) 幸存者对使用学术医疗中心的癌症登记处邮寄调查的反应性,(2) 评估反应性是否根据社会人口学特征和病史而变化,以及 (3) 检查受访者的认知度和意愿,以及通过国家癌症登记处联系以进行未来研究的普遍性和相关性。2004 年 1 月至 2009 年 12 月期间诊断的 0-III 期乳腺癌和结直肠癌幸存者是从学术界确定的医疗中心癌症登记处。幸存者将收到一封带有退出选项的邀请函,以及一份评估社会人口特征、病史以及后续癌症护理获取和利用的调查。共有 452 名乳腺癌幸存者 (31.4%) 和 53 名结直肠癌幸存者 (22.2%) 做出了回应。乳腺癌 (74%) 和结直肠癌 (64%) 受访者都非常愿意通过州癌症登记处进行联系,尽管很少有人知道该登记处,甚至更少人知道他们的信息在登记处。在多变量分析中,肿瘤 I 期和无癌症家族史分别与乳腺癌和结直肠癌幸存者的意愿相关。我们的研究结果支持使用州癌症登记处联系幸存者参与研究。幸存者将受益于研究人员和癌症登记处之间专注于健康促进干预措施的合作关系。
Little is known about cancer survivors' receptivity to being contacted through cancer registries for research and health promotion efforts. We sought to (1) determine breast and colorectal cancer (CRC) survivors' responsiveness to a mailed survey using an academic medical center's cancer registry, (2) assess whether responsiveness varied according to sociodemographic characteristics and medical history, and (3) examine the prevalence and correlates of respondents' awareness and willingness to be contacted through the state cancer registry for future research studies.Stage 0-III breast and CRC survivors diagnosed between January 2004 and December 2009 were identified from an academic medical center cancer registry. Survivors were mailed an invitation letter with an opt-out option, along with a survey assessing sociodemographic characteristics, medical history, and follow-up cancer care access and utilization.A total of 452 (31.4 %) breast and 53 (22.2 %) CRC survivors responded. Willingness to be contacted through the state cancer registry was high among both breast (74 %) and CRC (64 %) respondents even though few were aware of the registry and even fewer knew that their information was in the registry. In multivariable analyses, tumor stage I and not having a family history of cancer were associated with willingness among breast and CRC survivors, respectively.Our findings support the use of state cancer registries to contact survivors for participation in research studies.Survivors would benefit from partnerships between researchers and cancer registries that are focused on health promotion interventions.