Groombridge Claire, Burgess Bronwyn, Spigelman Allan D, O'Toole Libby
Hunter Family Cancer Service, Hunter Genetics, PO Box 84, Waratah 2298 New South Wales, Australia.
Fam Cancer. 2007;6(3):323-4. doi: 10.1007/s10689-007-9121-4. Epub 2007 Mar 2.
The Hereditary Cancer Registers (HCR) offer registration to individuals at risk of hereditary bowel cancer. Most families are registered to the HCR via Familial Cancer Clinics (FCC)s. The FCCs work together with the HCR to inform family members that they may be at increased risk of hereditary bowel cancer. In 2002, The Hunter Family Cancer Service (HFCS) and the HCR developed a system to ensure at risk family members become informed of their risk. Evaluation of this system is presented. The system involves tracking which family members are informed of their risk using a rating system. Being informed is graded numerically, from 5 (not informed) through to 1(definitely informed). Changes in score are brought about through staff and the FCC and HCR working with registrants to contact at risk family members. This study analyses data collected for a subgroup of 21 families registered with the HCR by the HFCS. Baseline and resulting scores indicated whether the 738 at risk family members had become better informed of their risk. One hundred and sixty eight individuals changed to a score of "definitely informed" and 230 individuals score changed from "not informed" to being better informed. The results demonstrate significant change in these family members towards becoming better informed (z = -13.88, P < 0.0001, Wilcoxon signed ranks test). These data suggest that the system for informing family members of their risk has resulted in significant positive change towards these individuals becoming more informed. The system has the potential to reach over 2,800 at risk family members, of registered families, resulting in improved surveillance and better health outcomes.
遗传性癌症登记处(HCR)为有遗传性肠癌风险的个人提供登记服务。大多数家庭通过家族癌症诊所(FCC)向HCR登记。FCC与HCR合作,告知家庭成员他们可能有更高的遗传性肠癌风险。2002年,亨特家族癌症服务中心(HFCS)和HCR开发了一个系统,以确保有风险的家庭成员了解自己的风险。本文介绍了对该系统的评估。该系统包括使用评分系统跟踪哪些家庭成员了解了自己的风险。了解情况的程度从5分(未了解)到1分(肯定了解)进行数字分级。分数的变化是通过工作人员以及FCC和HCR与登记者合作,联系有风险的家庭成员来实现的。本研究分析了HFCS向HCR登记的21个家庭亚组收集的数据。基线分数和最终分数表明738名有风险的家庭成员是否对自己的风险有了更好的了解。168人变为“肯定了解”评分,230人的评分从“未了解”变为了解程度有所提高。结果表明,这些家庭成员在了解情况方面有显著变化(z = -13.88,P < 0.0001,Wilcoxon符号秩检验)。这些数据表明,告知家庭成员风险的系统已使这些人在了解情况方面有了显著的积极变化。该系统有可能覆盖登记家庭中2800多名有风险的家庭成员,从而改善监测并带来更好的健康结果。