Journal
HUMAN GENETICS
Volume 140, Issue 12, Pages 1695-1708Publisher
SPRINGER
DOI: 10.1007/s00439-021-02366-0
Keywords
-
Categories
Funding
- Canadian Institutes of Health Research (CIHR) [333703]
- Canadian Centre for Applied Research in Cancer Control (ARCC Seed Grant) [2015-703549]
- Public Genomics Team
- CIHR New Investigator Award
- Research Training Centre at St. Michael's Hospital, CIHR [GSD164222]
- ARCC
- Canadian Cancer Society [2015-703549]
- Research Training Centre at St. Michael's Hospital
- CIHR [GSD-425969]
- University of Toronto
- Fondation Baxter and Alma Ricard Chair in Inner City Health at St. Michael's Hospital
Ask authors/readers for more resources
The study found that preferences for how to be recontacted varied based on the certainty of the results. Participants were more willing to receive updates from a doctor for certain results, while they preferred using an online database for VUS results. Qualitative data revealed that preferences for provider-mediated recontact were influenced by trust and desire for control.
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.
Authors
I am an author on this paper
Click your name to claim this paper and add it to your profile.
Reviews
Recommended
No Data Available