Evidence map›Paper›PMID 34537903›Full record

ArticleHuman genetics2021

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

Chloe Mighton, Marc Clausen, Agnes Sebastian, Sarah M Muir, Salma Shickh, Nancy N Baxter, Adena Scheer, Emily Glogowski, Kasmintan A Schrader, Kevin E Thorpe and 6 more

Abstract read
PubMed Publisher
In one paragraph

Article in Human genetics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Review
  4. Article
  5. Article
  6. Article
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  8. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors.

Chloe MightonInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Marc ClausenLi Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Agnes SebastianInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Sarah M MuirLi Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Salma ShickhInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Nancy N BaxterInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Adena ScheerLi Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Emily GlogowskiSanofi Genzyme, New York, NY, USA.
Kasmintan A SchraderBC Cancer, Vancouver, BC, Canada.
Kevin E ThorpeLi Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Theresa H M KimLi Ka Shing Knowledge Institute, St. Michael's Hospital, Unity Health Toronto, Toronto, ON, Canada.
Jordan Lerner-EllisLaboratory Medicine and Pathobiology, University of Toronto, Toronto, ON, Canada.
Raymond H KimUniversity Health Network, Toronto, ON, Canada.
Dean A RegierBC Cancer, Vancouver, BC, Canada.
Ahmed M BayoumiInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Yvonne BombardInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. yvonne.bombard@utoronto.ca.ORCID http://orcid.org/0000-0002-9516-4539

Funding

Canadian Centre for Applied Research in Cancer Control 2015-703549CIHR 333703
6 · The paper itself

Abstract

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.

Indexed as

Duty to RecontactGenetic TestingPatient PreferenceAdultChoice BehaviorFemaleHealth ExpendituresHumansMaleMiddle AgedPatient PortalsPublic OpinionSurveys and Questionnaires

Identifiers

PMID34537903

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.