Victoria Cancer Council Colorectal Cancer Survey

The collection is a result of data collected from colorectal cancer patients and their first degree relatives (FDRs) as part of a project testing the influence of intervention strategies and socio demographic factors on proportion of subjects who undertake screening tests. The index case patients for the study were recruited from Victorians who had a diagnosis of colorectal cancer within the previous four months. Recruitment continued for the first 12 months of the study. FDRs, defined as parents, siblings or children of the index case, were subdivided into three risk categories. The dataset is the result of computer-assisted telephone interviews (CATI) of index case patients and their FDRs. Both groups were asked to provide information about their demographic characteristics, details of health care providers and their quality of life. Index cases were asked to provide information on family history of cancer and information regarding FDRs. FDRs were asked to provide information to assess their likely risk status and on their history of colorectal screening. The index cases and their FDRs were randomly divided into two groups. One control group that received minimal ethical care and another treatment group that received the intervention care comprising detailed tailored advice - which was also sent to their GPs. Follow up surveys were/will be conducted at 12, 24 and 36 months. These surveys gather information on quality of life, tests undertaken and their outcomes, adherence to guideline recommendations and attrition bias. Data collection commenced in 2009 and is ongoing; on 15 April 2011 the database contained: 486 completed baseline surveys of index cases; 406 FDR surveys (but details of 1658). Of the 1658 FDRs, 924 have increased risk, 238 have moderate risk, and 477 have high risk.本数据集源自一项旨在探究干预策略与社会人口学因素对结直肠癌筛查参与率影响的研究项目，其数据采集自结直肠癌患者及其一级亲属（first degree relatives, FDRs）。本研究的指示病例（index case patients）从过去四个月内确诊结直肠癌的维多利亚州居民中招募而来，招募工作贯穿研究的前12个月。一级亲属被定义为指示病例的父母、兄弟姐妹或子女，并被划分为三个风险类别。本数据集通过对指示病例及其一级亲属开展计算机辅助电话访谈（computer-assisted telephone interviews, CATI）获得。两组受访者均需提供人口统计学特征、医疗服务提供者详情及生活质量相关信息。指示病例还需提供癌症家族史及一级亲属相关信息；一级亲属则需提供可用于评估其风险等级的信息，以及结直肠癌筛查史。随后，指示病例及其一级亲属被随机分为两组：对照组仅接受最低限度的伦理关怀，干预组则接受包含个性化定制建议的干预措施，且该建议会同步发送至其全科医生（General Practitioners, GPs）。后续分别在12、24及36个月开展随访调查，收集内容涵盖生活质量、已实施的筛查项目及其结果、对指南推荐方案的依从性，以及失访偏倚相关数据。本数据集的采集工作始于2009年，目前仍在持续；截至2011年4月15日，数据库收录情况如下：指示病例的有效基线调查问卷共486份；一级亲属有效调查问卷共406份，但涵盖了1658名一级亲属的相关信息。在1658名一级亲属中，924人属于风险升高组，238人属于中度风险组，477人属于高风险组。