A. Cust, A. Smit, D. Espinoza, Keogh Louise, P. Butow, K. Dunlop, J. Kirk, A. Newson
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Methods: We conducted a study examining the impact of giving information on personalised genomic risk of melanoma to the public. Participants (n=101) received a personalised booklet presenting their melanoma genomic risk based on variants in 21 genes, together with telephone-based genetic counselling and generic educational materials. They completed a questionnaire 3-months after receiving their personal genomic risk of melanoma. To further contextualise these data, we conducted semi-structured qualitative interviews with 30 participants. Results: Participants9 communication with health professionals according to melanoma genomic risk category was 41% for high-risk, 16% for average-risk and 13% for low-risk (P=0.02). Communication with family was 83% for high-risk, 65% for average-risk, 79% for low-risk participants (P=0.19); and communication with friends was 55% for high-risk, 43% for average-risk, 54% for low-risk participants (P=0.49). Preliminary thematic analysis found that preventive behaviours and early detection were raised by participants in discussions with family and doctors. Reasons for not communicating genomic risk included: concern about causing worry and not feeling a need to share the information. Conclusions: Genomic risk information prompted conversations about melanoma risk and prevention, most frequently with family. When stratified by genomic risk, comparable numbers of participants discussed their genomic risk with family and friends, but communication with health professionals was more frequent among participants in a high-risk category. Citation Format: Anne E. Cust, Amelia K. Smit, David Espinoza, Keogh Louise, Phyllis N. Butow, Kate Dunlop, Judy Kirk, Ainsley J. Newson. Communicating information about personalised genomic risk of melanoma to family, friends, and health professionals. [abstract]. 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Participants (n=101) received a personalised booklet presenting their melanoma genomic risk based on variants in 21 genes, together with telephone-based genetic counselling and generic educational materials. They completed a questionnaire 3-months after receiving their personal genomic risk of melanoma. To further contextualise these data, we conducted semi-structured qualitative interviews with 30 participants. Results: Participants9 communication with health professionals according to melanoma genomic risk category was 41% for high-risk, 16% for average-risk and 13% for low-risk (P=0.02). Communication with family was 83% for high-risk, 65% for average-risk, 79% for low-risk participants (P=0.19); and communication with friends was 55% for high-risk, 43% for average-risk, 54% for low-risk participants (P=0.49). Preliminary thematic analysis found that preventive behaviours and early detection were raised by participants in discussions with family and doctors. Reasons for not communicating genomic risk included: concern about causing worry and not feeling a need to share the information. Conclusions: Genomic risk information prompted conversations about melanoma risk and prevention, most frequently with family. When stratified by genomic risk, comparable numbers of participants discussed their genomic risk with family and friends, but communication with health professionals was more frequent among participants in a high-risk category. Citation Format: Anne E. Cust, Amelia K. Smit, David Espinoza, Keogh Louise, Phyllis N. Butow, Kate Dunlop, Judy Kirk, Ainsley J. Newson. Communicating information about personalised genomic risk of melanoma to family, friends, and health professionals. [abstract]. In: Proceedings of the AACR Special Conference: Improving Cancer Risk Prediction for Prevention and Early Detection; Nov 16-19, 2016; Orlando, FL. 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引用次数: 0
摘要
背景:预计癌症风险预测工具,包括那些具有基因组风险信息的工具,将越来越多地用于向公众传达个性化的癌症风险。接受有关个人癌症基因风险的信息可能会鼓励与家人、朋友和健康专业人士就癌症预防和早期检测进行对话,但很少有研究对此进行调查。目的:采用混合方法探讨参与者与家人、朋友和卫生专业人员就个人黑色素瘤基因组风险的交流情况,并根据参与者基因组风险类别(低、平均、高)检查结果。方法:我们进行了一项研究,检查向公众提供有关黑色素瘤个性化基因组风险信息的影响。参与者(n=101)收到了一本个性化的小册子,介绍了他们基于21个基因变异的黑色素瘤基因组风险,以及基于电话的遗传咨询和通用的教育材料。他们在得知患黑色素瘤的个人基因风险3个月后完成了一份调查问卷。为了进一步了解这些数据,我们对30名参与者进行了半结构化的定性访谈。结果:根据黑色素瘤基因组风险类别,参与者与卫生专业人员的沟通为高风险41%,平均风险16%,低风险13% (P=0.02)。高风险受试者与家人的沟通率为83%,平均风险受试者为65%,低风险受试者为79% (P=0.19);与朋友的交流在高风险参与者中占55%,平均风险参与者中占43%,低风险参与者中占54% (P=0.49)。初步专题分析发现,参与者在与家人和医生讨论时提出了预防行为和早期发现。不沟通基因风险的原因包括:担心引起担忧,不觉得有必要分享信息。结论:基因组风险信息促使人们对黑色素瘤风险和预防进行对话,最常见的是与家人进行对话。当按基因组风险分层时,相当数量的参与者与家人和朋友讨论了他们的基因组风险,但在高风险类别的参与者中,与卫生专业人员的沟通更为频繁。引文格式:Anne E. Cust, Amelia K. Smit, David Espinoza, Keogh Louise, Phyllis N. Butow, Kate Dunlop, Judy Kirk, Ainsley J. Newson。与家人、朋友和卫生专业人员沟通有关黑色素瘤的个性化基因组风险的信息。[摘要]。摘自:AACR特别会议论文集:改进癌症风险预测以预防和早期发现;2016年11月16日至19日;费城(PA): AACR;Cancer epidemiology Biomarkers pre2017;26(5增刊):摘要nr B15。
Abstract B15: Communicating information about personalised genomic risk of melanoma to family, friends, and health professionals
Background: It is anticipated that cancer risk prediction tools, including those with genomic risk information, will increasingly be used to communicate personalised cancer risk to the public. Receiving information on personal genomic risk of cancer might encourage conversations about cancer prevention and early detection with family, friends and health professionals, but few studies have examined this. Aims: To explore participant communication about personal genomic risk of melanoma to family, friends and health professionals, using a mixed-methods approach, and to examine results according to participants9 genomic risk category (low, average, high). Methods: We conducted a study examining the impact of giving information on personalised genomic risk of melanoma to the public. Participants (n=101) received a personalised booklet presenting their melanoma genomic risk based on variants in 21 genes, together with telephone-based genetic counselling and generic educational materials. They completed a questionnaire 3-months after receiving their personal genomic risk of melanoma. To further contextualise these data, we conducted semi-structured qualitative interviews with 30 participants. Results: Participants9 communication with health professionals according to melanoma genomic risk category was 41% for high-risk, 16% for average-risk and 13% for low-risk (P=0.02). Communication with family was 83% for high-risk, 65% for average-risk, 79% for low-risk participants (P=0.19); and communication with friends was 55% for high-risk, 43% for average-risk, 54% for low-risk participants (P=0.49). Preliminary thematic analysis found that preventive behaviours and early detection were raised by participants in discussions with family and doctors. Reasons for not communicating genomic risk included: concern about causing worry and not feeling a need to share the information. Conclusions: Genomic risk information prompted conversations about melanoma risk and prevention, most frequently with family. When stratified by genomic risk, comparable numbers of participants discussed their genomic risk with family and friends, but communication with health professionals was more frequent among participants in a high-risk category. Citation Format: Anne E. Cust, Amelia K. Smit, David Espinoza, Keogh Louise, Phyllis N. Butow, Kate Dunlop, Judy Kirk, Ainsley J. Newson. Communicating information about personalised genomic risk of melanoma to family, friends, and health professionals. [abstract]. In: Proceedings of the AACR Special Conference: Improving Cancer Risk Prediction for Prevention and Early Detection; Nov 16-19, 2016; Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(5 Suppl):Abstract nr B15.