Reading Between the Lines: A Comparison of Responders and Non-responders to a Family History Questionnaire and Implications for Cancer Genetic Counselling
Reading Between the Lines: A Comparison of Responders and Non-responders to a Family History Questionnaire and Implications for Cancer Genetic Counselling
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DOI：
10.1007/s10897-011-9399-0
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发表时间：
2012-04-01
影响因子：
1.9
通讯作者：
Palma, Laura
中科院分区：
文献类型：
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作者：
Appleby-Tagoe, Julia H.;Foulkes, William D.;Palma, Laura
家族史问卷（FHQ）是癌症遗传咨询的有用工具，可为家系构建和个体化癌症风险评估提供信息基础。然而，在使用FHQ的家族性癌症诊所中，报告的邮寄FHQ的返回率低于预期，并且不知道患者是否认为需要完成FHQ是获得癌症遗传学服务的障碍。本研究批判性地评估了在加拿大魁北克的一家遗传性癌症诊所中，所有常规新患者转诊时使用邮寄FHQ的情况。对FHQ的响应/不响应的原因以及管理问卷对患者自我报告的追求遗传咨询的动机水平的影响进行了检查。在研究期间转介的112名符合条件的个人中，86人完成了半结构化电话调查;其中，45%在电话调查之前已退回邮寄的FHQ（应答者），55%未退回（无应答者）。总体而言，大多数参与者表示FHQ是收集家族史信息的可接受和可理解的方法。不归还FHQ的最常见原因是（不好的）时机（56%）和难以获得家族史信息（46%）。无应答者与向亲属询问所需信息的困难显著相关（p=0.011），与应答者相比，无应答者认为癌症遗传咨询的总体感知益处较少（p
Family history questionnaires (FHQ) are useful tools for cancer genetic counseling, providing an informational basis for pedigree construction and individualized cancer risk assessment. Reported return rates of mailed FHQs amongst familial cancer clinics that utilize them are lower than desired however, and it is unknown whether patients perceive required completion of a FHQ as a barrier to access of cancer genetics services. This study critically evaluated the use of a mailed FHQ for all routine new patient referrals to a single hereditary cancer clinic in Quebec, Canada. Reasons for response/non-response to a FHQ and the effect of administration of a questionnaire on patients' self-reported level of motivation to pursue genetic counseling, were examined. Of 112 eligible individuals referred during the study period, 86 completed a semi-structured telephone survey; of these, 45% had returned the mailed FHQ prior to the telephone survey (Responders) and 55% had not (Non-responders). Overall, the majority of participants indicated a FHQ is an acceptable and understandable method of collecting family history information. Most prevalent reasons for not returning the FHQ were (bad) timing (56%), and difficulty accessing family history information (46%). Non-response was significantly associated with difficulty in asking relatives for the requested information (p=0.011), and Non-responders cited fewer overall perceived benefits of cancer genetic counseling as compared with Responders (p