Patient and public preferences for being recontacted with updated genomic results: a mixed methods study,Human Genetics

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Patient and public preferences for being recontacted with updated genomic results: a mixed methods study
Human Genetics ( IF 5.3 ) Pub Date : 2021-09-18 , DOI: 10.1007/s00439-021-02366-0
Chloe Mighton _{1,

2} , Marc Clausen ₂ , Agnes Sebastian _{1,

2} , Sarah M Muir ₂ , Salma Shickh _{1,

2} , Nancy N Baxter _{1,

2,

3,

4} , Adena Scheer _{2,

5} , Emily Glogowski ₆ , Kasmintan A Schrader _{7,

8} , Kevin E Thorpe _{2,

9} , Theresa H M Kim ₂ , Jordan Lerner-Ellis _{10,

11} , Raymond H Kim _{12,

13,

14} , Dean A Regier _{7,

15} , Ahmed M Bayoumi _{1,

2,

14,

16} , Yvonne Bombard _{1,

2}

Affiliation

Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Li Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Melbourne School of Population and Global Health, University of Melbourne, Melbourne, VIC, Australia.
Department of Surgery, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Division of General Surgery, Department of Surgery, University of Toronto, Toronto, ON, Canada.
Sanofi Genzyme, New York, NY, USA.
BC Cancer, Vancouver, BC, Canada.
Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
Laboratory Medicine and Pathobiology, University of Toronto, Toronto, ON, Canada.
Pathology and Laboratory Medicine, Mount Sinai Hospital, Sinai Health, Toronto, ON, Canada.
University Health Network, Toronto, ON, Canada.
The Hospital for Sick Children, Toronto, ON, Canada.
Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
School of Population and Public Health (SPPH), University of British Columbia, Vancouver, BC, Canada.
Division of General Internal Medicine, Department of Medicine, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.

Variants of uncertain significance (VUS) are frequently reclassified but recontacting patients with updated results poses significant resource challenges. We aimed to characterize public and patient preferences for being recontacted with updated results. A discrete choice experiment (DCE) was administered to representative samples of the Canadian public and cancer patients. DCE attributes were uncertainty, cost, recontact modality, choice of results, and actionability. DCE data were analyzed using a mixed logit model and by calculating willingness to pay (WTP) for types of recontact. Qualitative interviews exploring recontact preferences were analyzed thematically. DCE response rate was 60% (n = 1003, 50% cancer patient participants). 31 participants were interviewed (11 cancer patients). Interviews revealed that participants expected to be recontacted. Quantitatively, preferences for how to be recontacted varied based on certainty of results. For certain results, WTP was highest for being recontacted by a doctor with updates ($1075, 95% CI: $845, $1305) and for contacting a doctor to request updates ($1038, 95% CI: $820, $1256). For VUS results, WTP was highest for an online database ($1735, 95% CI: $1224, $2247) and for contacting a doctor ($1705, 95% CI: $1102, $2307). Qualitative data revealed that preferences for provider-mediated recontact were influenced by trust in healthcare providers. Preferences for a database were influenced by lack of trust in providers and desire for control. Patients and public participants support an online database (e.g. patient portal) to recontact for VUS, improving feasibility, and provider-mediated recontact for certain results, consistent with usual care.

中文翻译：

与更新的基因组结果重新联系的患者和公众偏好：混合方法研究

意义不确定的变体 (VUS) 经常被重新分类，但重新联系患者并获得更新的结果会带来重大的资源挑战。我们旨在表征公众和患者对重新联系更新结果的偏好。对加拿大公众和癌症患者的代表性样本进行了离散选择实验 (DCE)。DCE 属性是不确定性、成本、重新联系方式、结果选择和可操作性。DCE 数据使用混合 logit 模型并通过计算再联系类型的支付意愿 (WTP) 进行分析。对探索再接触偏好的定性访谈进行了专题分析。DCE 响应率为 60% ( n = 1003，50% 的癌症患者参与者）。采访了 31 名参与者（11 名癌症患者）。采访显示，参与者希望被重新联系。从数量上讲，如何重新联系的偏好因结果的确定性而异。对于某些结果，被医生重新联系并提供更新的 WTP 最高（1075 美元，95% CI：845 美元，1305 美元）和联系医生请求更新（1038 美元，95% CI：820 美元，1256 美元）。对于 VUS 结果，在线数据库（$1735，95% CI：$1224，$2247）和联系医生（$1705，95% CI：$1102，$2307）的 WTP 最高。定性数据显示，对提供者介导的再联系的偏好受到对医疗保健提供者的信任的影响。对数据库的偏好受到对提供者缺乏信任和控制欲的影响。

更新日期：2021-09-19

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