Extended Family Outreach in Hereditary Cancer Using Web-Based Genealogy, Direct-to-Consumer Ancestry Genetics, and Social Media: Mixed Methods Process Evaluation of the ConnectMyVariant Intervention.

IF 3.3 Q2 ONCOLOGY JMIR Cancer Pub Date : 2023-04-20 DOI:10.2196/43126
Annie T Chen, Jennifer Huey, Sandra Coe, Jailanie Kaganovsky, Emily A Malouf, Heather D Evans, Jill Daker, Elizabeth Harper, Olivia Fordiani, Emma E Lowe, Caileigh McGraw Oldroyd, Ashlyn Price, Kristlynn Roth, Julie Stoddard, Jill N Crandell, Brian H Shirts
{"title":"Extended Family Outreach in Hereditary Cancer Using Web-Based Genealogy, Direct-to-Consumer Ancestry Genetics, and Social Media: Mixed Methods Process Evaluation of the ConnectMyVariant Intervention.","authors":"Annie T Chen,&nbsp;Jennifer Huey,&nbsp;Sandra Coe,&nbsp;Jailanie Kaganovsky,&nbsp;Emily A Malouf,&nbsp;Heather D Evans,&nbsp;Jill Daker,&nbsp;Elizabeth Harper,&nbsp;Olivia Fordiani,&nbsp;Emma E Lowe,&nbsp;Caileigh McGraw Oldroyd,&nbsp;Ashlyn Price,&nbsp;Kristlynn Roth,&nbsp;Julie Stoddard,&nbsp;Jill N Crandell,&nbsp;Brian H Shirts","doi":"10.2196/43126","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Cascade screening, defined as helping at-risk relatives get targeted genetic testing of familial variants for dominant hereditary cancer syndromes, is a proven component of cancer prevention; however, its uptake is low. We developed and conducted a pilot study of the ConnectMyVariant intervention, in which participants received support to contact at-risk relatives that extended beyond first-degree relatives and encourage relatives to obtain genetic testing and connect with others having the same variant through email and social media. The support that participants received included listening to participants' needs, assisting with documentary genealogy to find common ancestors, facilitating direct-to-consumer DNA testing and interpretation, and assisting with database searches.</p><p><strong>Objective: </strong>We aimed to assess intervention feasibility, motivations for participating, and engagement among ConnectMyVariant participants and their families.</p><p><strong>Methods: </strong>We used a mixed methods design including both quantitative and qualitative evaluation methods. First, we considered intervention feasibility by characterizing recruitment and retention using multiple recruitment mechanisms, including web-based advertising, dissemination of invitations with positive test results, provider recruitment, snowball sampling, and recruitment through web-based social networks and research studies. Second, we characterized participants' motivations, concerns, and engagement through project documentation of participant engagement in outreach activities and qualitative analysis of participant communications. We used an inductive qualitative data analysis approach to analyze emails, free-text notes, and other communications generated with participants as part of the ConnectMyVariant intervention.</p><p><strong>Results: </strong>We identified 84 prospective participants using different recruitment mechanisms; 57 participants were ultimately enrolled in the study for varying lengths of time. With respect to motivations for engaging in the intervention, participants were most interested in activities relating to genealogy and communication with others who had their specific variants. Although there was a desire to find others with the same variant and prevent cancer, more participants expressed an interest in learning about their genealogy and family health history, with prevention in relatives considered a natural side effect of outreach. Concerns about participation included whether relatives would be open to communication, how to go about it, and whether others with a specific variant would be motivated to help find common ancestors. We observed that ConnectMyVariant participants engaged in 6 primary activities to identify and communicate with at-risk relatives: sharing family history, family member testing, direct-to-consumer genealogy genetic testing analysis, contacting (distant) relatives, documentary genealogy, and expanding variant groups or outreach. Participants who connected with others who had the same variant were more likely to engage with several extended family outreach activities.</p><p><strong>Conclusions: </strong>This study demonstrated that there is an interest in extended family outreach as a mechanism to improve cascade screening for hereditary cancer prevention. Additional research to systematically evaluate the outcomes of such outreach may be challenging but is warranted.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":null,"pages":null},"PeriodicalIF":3.3000,"publicationDate":"2023-04-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10160942/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"JMIR Cancer","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.2196/43126","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
引用次数: 0

Abstract

Background: Cascade screening, defined as helping at-risk relatives get targeted genetic testing of familial variants for dominant hereditary cancer syndromes, is a proven component of cancer prevention; however, its uptake is low. We developed and conducted a pilot study of the ConnectMyVariant intervention, in which participants received support to contact at-risk relatives that extended beyond first-degree relatives and encourage relatives to obtain genetic testing and connect with others having the same variant through email and social media. The support that participants received included listening to participants' needs, assisting with documentary genealogy to find common ancestors, facilitating direct-to-consumer DNA testing and interpretation, and assisting with database searches.

Objective: We aimed to assess intervention feasibility, motivations for participating, and engagement among ConnectMyVariant participants and their families.

Methods: We used a mixed methods design including both quantitative and qualitative evaluation methods. First, we considered intervention feasibility by characterizing recruitment and retention using multiple recruitment mechanisms, including web-based advertising, dissemination of invitations with positive test results, provider recruitment, snowball sampling, and recruitment through web-based social networks and research studies. Second, we characterized participants' motivations, concerns, and engagement through project documentation of participant engagement in outreach activities and qualitative analysis of participant communications. We used an inductive qualitative data analysis approach to analyze emails, free-text notes, and other communications generated with participants as part of the ConnectMyVariant intervention.

Results: We identified 84 prospective participants using different recruitment mechanisms; 57 participants were ultimately enrolled in the study for varying lengths of time. With respect to motivations for engaging in the intervention, participants were most interested in activities relating to genealogy and communication with others who had their specific variants. Although there was a desire to find others with the same variant and prevent cancer, more participants expressed an interest in learning about their genealogy and family health history, with prevention in relatives considered a natural side effect of outreach. Concerns about participation included whether relatives would be open to communication, how to go about it, and whether others with a specific variant would be motivated to help find common ancestors. We observed that ConnectMyVariant participants engaged in 6 primary activities to identify and communicate with at-risk relatives: sharing family history, family member testing, direct-to-consumer genealogy genetic testing analysis, contacting (distant) relatives, documentary genealogy, and expanding variant groups or outreach. Participants who connected with others who had the same variant were more likely to engage with several extended family outreach activities.

Conclusions: This study demonstrated that there is an interest in extended family outreach as a mechanism to improve cascade screening for hereditary cancer prevention. Additional research to systematically evaluate the outcomes of such outreach may be challenging but is warranted.

Abstract Image

Abstract Image

Abstract Image

查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
使用基于网络的家谱、直接面向消费者的祖先遗传学和社交媒体的遗传性癌症的扩展家庭外展:ConnectMyVariant干预的混合方法过程评估。
背景:级联筛查,定义为帮助高危亲属获得显性遗传性癌症综合征家族变异的靶向基因检测,是癌症预防的一个已被证实的组成部分;然而,它的使用率很低。我们开发并进行了ConnectMyVariant干预的试点研究,在该研究中,参与者得到支持,可以联系除一级亲属以外的有风险的亲属,并鼓励亲属进行基因检测,并通过电子邮件和社交媒体与具有相同变体的其他人联系。参与者得到的支持包括倾听参与者的需求、协助提供家谱文件以寻找共同的祖先、促进直接面向消费者的DNA测试和解释,以及协助进行数据库搜索。目的:我们旨在评估ConnectMyVariant参与者及其家庭的干预可行性、参与动机和参与度。方法:采用定量评价与定性评价相结合的混合方法设计。首先,我们考虑了干预的可行性,通过使用多种招聘机制,包括基于网络的广告、具有阳性测试结果的邀请的传播、供应商招聘、滚雪球抽样和通过基于网络的社交网络和研究进行招聘,来描述招聘和保留的特征。其次,我们通过参与者参与外展活动的项目文档和参与者沟通的定性分析来描述参与者的动机、关注点和参与度。我们使用归纳定性数据分析方法来分析电子邮件、自由文本注释以及作为ConnectMyVariant干预的一部分与参与者产生的其他通信。结果:我们通过不同的招募机制确定了84名潜在参与者;57名参与者最终参加了这项研究,时间长短不一。关于参与干预的动机,参与者最感兴趣的是与家谱有关的活动,以及与具有特定变体的其他人的交流。尽管人们希望找到其他携带相同变异基因的人,以预防癌症,但更多的参与者表示有兴趣了解他们的家谱和家庭健康史,因为预防亲属被认为是推广活动的自然副作用。对参与的担忧包括亲属是否愿意交流,如何交流,以及其他携带特定变异基因的人是否有动力帮助寻找共同的祖先。我们观察到ConnectMyVariant参与者参与了6项主要活动来识别和沟通有风险的亲属:分享家族史,家庭成员测试,直接面向消费者的家谱基因测试分析,联系(远亲),记录家谱,扩大变异群体或外展。与携带相同变异基因的人联系的参与者更有可能参与一些扩展的家庭外展活动。结论:本研究表明,扩大家庭外展是一种改善遗传性癌症预防级联筛查的机制。进一步的研究以系统地评估这种推广的结果可能具有挑战性,但这是必要的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 去求助
来源期刊
JMIR Cancer
JMIR Cancer ONCOLOGY-
CiteScore
4.10
自引率
0.00%
发文量
64
审稿时长
12 weeks
期刊最新文献
Oral Cancer Incidence Among Adult Males With Current or Former Use of Cigarettes or Smokeless Tobacco: Population-Based Study. Uncovering the Daily Experiences of People Living With Advanced Cancer Using an Experience Sampling Method Questionnaire: Development, Content Validation, and Optimization Study. Impact of Patient Personality on Adherence to Oral Anticancer Medications: An Opportunity? Development of an Educational Website for Patients With Cancer and Preexisting Autoimmune Diseases Considering Immune Checkpoint Blockers: Usability and Acceptability Study. An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Beta Stage Usability Study.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1