Perceived risk following melanoma genetic testing: a 2-year prospective study distinguishing subjective estimates from recall.
Perceived risk following melanoma genetic testing: a 2-year prospective study distinguishing subjective estimates from recall.
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DOI：
10.1007/s10897-013-9676-1
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发表时间：
2014-06
影响因子：
1.9
通讯作者：
Leachman, Sancy A.
中科院分区：
文献类型：
--
作者：
Aspinwall, Lisa G.;Taber, Jennifer M.;Kohlmann, Wendy;Leaf, Samantha L.;Leachman, Sancy A.
预测性基因检测的一个主要目标是在疾病发作前提醒人们注意他们的风险;然而，人们对基因检测后风险认知如何变化以及信息是否会随着时间的推移而准确地回忆起来知之甚少。在美国，CDKN 2A/p16突变赋予黑色素瘤76%的终生风险。在遗传咨询和检测报告后，在未来2年内对60名2种扩展CDKN 2A/p16激酶的成年成员进行了5次主观风险估计和对顾问提供的风险估计的回忆评估。未报告风险认知较基线的持续变化。未受影响的携带者（n=15）一贯报告主观风险估计（46%）显著低于他们实际给予（76%，p <0.001）或回忆已给予（60%，p <0.001）。非携带者（n=27）的风险估计在结果披露后下降，但反弹，主观和回忆的估计随后超过了他们被告知的顾问（均p < .001）。受影响的携带者（n=18）对发展新的黑色素瘤的风险估计与顾问提供的信息（p = 0.362）相一致。对于所有3个患者组，多个风险指标的结果一致，并且在统计学控制黑色素瘤风险的人口统计学、表型和基线行为贡献者时保持相似。这些发现与其他风险认知的研究是一致的，但需要对更多样化的人群进行更多的研究，以了解初始风险估计的持续性及其与咨询师在遗传咨询期间提供的信息的差异背后的原因。此外，确定是否持有主观风险认知，从顾问提供的信息不同，最终影响遵守管理建议将有助于指导遗传咨询实践中的风险信息的介绍。
A major goal of predictive genetic testing is to alert people to their risk before illness onset; however, little is known about how risk perceptions change following genetic testing and whether information is recalled accurately over time. In the United States, a CDKN2A/p16 mutation confers 76% lifetime risk of melanoma. Following genetic counseling and test reporting, subjective risk estimates and recall of counselor-provided risk estimates were assessed 5 times over the next 2 years among 60 adult members of 2 extended CDKN2A/p16 kindreds. No sustained changes from baseline in risk perceptions were reported. Unaffected carriers (n=15) consistently reported significantly lower subjective risk estimates (46%) than they were actually given (76%, p < .001) or recalled having been given (60%, p < .001). Noncarriers’ (n=27) risk estimates decreased following results disclosure, but rebounded, with both subjective and recalled estimates subsequently exceeding what they were told by the counselor (both ps < .001). Affected carriers’ (n=18) risk estimates for developing a new melanoma corresponded well to counselor-provided information (p =.362). For all 3 patient groups, results were consistent across multiple risk measures and remained similar when demographic, phenotypic, and baseline behavioral contributors to melanoma risk were statistically controlled. These findings are consistent with other studies of risk perception, but additional studies of more diverse populations are needed to understand the reasons behind both the persistence of initial risk estimates and their divergence from information provided by the counselor during genetic counseling. Additionally, determining whether holding subjective risk perceptions that differ from counselor-provided information ultimately affects adherence to management recommendations will help guide the presentation of risk information in genetic counseling practice.
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DOI：
10.1093/jnci/94.12.894
发表时间：
2002-06-19
期刊：
JOURNAL OF THE NATIONAL CANCER INSTITUTE
影响因子：
--
作者：
Bishop, DT;Demenais, F;Tucker, MA
通讯作者：
Tucker, MA
影响因子：
51.1
作者：
Hansen, CB;Wadge, LM;Leachman, SA
通讯作者：
Leachman, SA
影响因子：
4.2
作者：
Croyle, Robert T.;Loftus, Elizabeth F.;Gettig, JoAnn
通讯作者：
Gettig, JoAnn
影响因子：
1.9
作者：
Claes, E;Evers-Kiebooms, G;Legius, E
通讯作者：
Legius, E
影响因子：
13.8
作者：
Aspinwall, Lisa G.;Leaf, Saniantha L.;Leachman, Sancy A.
通讯作者：
Leachman, Sancy A.