Cancer genetic predisposition: information needs of patients irrespective of risk level
Cancer genetic predisposition: information needs of patients irrespective of risk level
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DOI：
10.1007/s10689-009-9256-6
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发表时间：
2009-12-01
期刊：
影响因子：
2.2
通讯作者：
Clifford, Collette
中科院分区：
文献类型：
--
作者：
Metcalfe, Alison;Werrett, Julie;Clifford, Collette
增加对人们对癌症遗传易感性的信息需求的了解可以开发材料来改善高风险人群的决策，而那些风险较低的人可以在不需要转介遗传学服务的情况下减少焦虑。本研究旨在确定患者对癌症遗传易感性的信息需求，并探索这种需求如何根据风险认知，癌症担忧，个人动机和人口统计学而变化。第一阶段在参与者的遗传风险评估之前和之后使用半结构化电话访谈。研究结果为第二阶段提供了信息，即对1，112名患者进行了结构化问卷调查，在遗传风险评估之前和之后。参与者按风险水平分层，包括那些关注乳腺癌、卵巢癌或结肠直肠癌遗传易感性的人。大约512人（46%）在所有风险类别中有相同比例的应答者和无应答者。研究结果表明，无论一个人的实际或感知的风险水平，癌症的担忧，人口背景或个人动机;所需信息类型的优先级是相似的。最大的重点是提供关于如何评估风险的信息。最不重要的是了解基因和遗传模式。大多数与会者报告说，在获取或查找信息方面存在困难。人们的信息需求是一致的，无论其风险水平如何，因此可以为任何要求癌症遗传风险评估的人开发通用信息包。更好的信息可能有助于患者的理解，并最终增加与推荐的筛查和预防措施的一致性。
Increased insight into the information needs of people about cancer genetic predisposition could allow materials to be developed to improve decision-making for those at high risk, whilst those at lower risk could have their anxiety reduced without the need for referral to genetics services. This study aimed to identify information needs of patients concerned about a genetic predisposition to cancer, and explore how this varied according to risk perception, cancer worry, personal motivation and demographics. Stage 1 used semi-structured telephone interviews pre and post participants' genetic risk assessment. The findings informed stage two, a structured questionnaire survey of 1,112 patients, pre and post their genetic risk assessment. Participants were stratified by risk level and included those concerned about an inherited predisposition to breast, ovarian or colorectal cancer. About 512 (46%) responded with equal proportions of responders and non-responders across the risk categories. Findings indicated that irrespective of a person's actual or perceived level of risk, cancer worry, demographic background or personal motivation; priorities in the type of information required were similar. Greatest emphasis focused on information provision about how risk was assessed. Least important was acquiring an understanding about genes and inheritance patterns. Most participants reported difficulties accessing or finding information. Peoples' information needs are consistent irrespective of their risk level and therefore generalised information packages could be developed for anyone requesting cancer genetic risk assessment. Better information is likely to assist patients' understanding and ultimately increase concordance with recommended screening and preventative measures.