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梅奥诊所生物样本库中电子访视用于返回研究结果的可接受性

Acceptability of Electronic Visits for Return of Research Results in the Mayo Clinic Biobank.

作者信息

Olson Janet E, Ryu Euijung, Lyke Kelly J, Bielinski Suzette J, Winkler Erin M, Hathcock Matthew A, Bublitz Joshua T, Takahashi Paul Y, Cerhan James R

机构信息

Department of Health Sciences Research, Division of Epidemiology, Rochester, MN.

Department of Health Sciences Research, Division of Biomedical Statistics and Informatics, Rochester, MN.

出版信息

Mayo Clin Proc Innov Qual Outcomes. 2018 Sep 15;2(4):352-358. doi: 10.1016/j.mayocpiqo.2018.07.004. eCollection 2018 Dec.

Abstract

OBJECTIVE

To understand patient characteristics related to acceptability of returning individual research results via various modalities, focusing on electronic visits (e-visits).

PATIENTS AND METHODS

Twelve hundred participants from the Mayo Clinic Biobank were selected using a stratified random sampling approach based on sex, age, and education level. Mailed surveys ascertained return of results preferences for 2 disease vignettes (cystic fibrosis and hereditary breast cancer) and a pharmacogenomics vignette. The study was conducted from October 1, 2013, through March 31, 2014.

RESULTS

In all, 685 patients (57%) responded, and 60% reported liking e-visits, although the option of receiving results in an office visit was liked most frequently. Multivariable logistic models showed that the odds of liking the use of e-visits for returning results for cystic fibrosis and hereditary breast cancer were higher among those with higher education and better genetic knowledge and among those not living in proximity to the Mayo Clinic (Rochester, Minnesota). Level of genetic knowledge was not considerably associated with accepting e-visits, whereas education level remained important. For all vignettes, those who are divorced were less likely to accept e-visits.

CONCLUSION

Researchers are faced with a difficult challenge of returning results with a method that is both acceptable to recipients and logistically feasible. This study implies that the use of e-visits may be a viable option for return of results to stratify the chasm between in-person genetic counseling and online portal receipt of results.

摘要

目的

了解与通过各种方式返回个体研究结果的可接受性相关的患者特征,重点关注电子就诊(e-就诊)。

患者与方法

采用基于性别、年龄和教育水平的分层随机抽样方法,从梅奥诊所生物样本库中选取了1200名参与者。通过邮寄调查问卷确定了对2种疾病案例(囊性纤维化和遗传性乳腺癌)以及1种药物基因组学案例的结果返回偏好。该研究于2013年10月1日至2014年3月31日进行。

结果

共有685名患者(57%)做出回应,60%的患者表示喜欢e-就诊,不过最常被喜欢的结果接收方式是在门诊就诊时接收。多变量逻辑模型显示,在教育程度较高、遗传知识较好以及不住在梅奥诊所附近(明尼苏达州罗切斯特)的人群中,对于囊性纤维化和遗传性乳腺癌,喜欢通过e-就诊返回结果的几率更高。遗传知识水平与接受e-就诊的关联不大,而教育程度仍然很重要。对于所有案例,离婚者接受e-就诊的可能性较小。

结论

研究人员面临着一项艰巨的挑战,即要用一种既为接受者所接受又在后勤方面可行的方法返回结果。这项研究表明,使用e-就诊可能是一种可行的结果返回选项,以弥合面对面遗传咨询与通过在线门户接收结果之间的差距。

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