Health-care practitioners’ preferences for the return of secondary findings from next-generation sequencing: a discrete choice experiment

Shan Jiang, Aslam H. Anis, Ian Cromwell, Tima Mohammadi, Kasmintan A. Schrader, Janet Lucas, Christine M. Armour, Marc Clausen, Yvonne Bombard, Dean A. Regier

Research output: Contribution to journalArticlepeer-review

13 Citations (Scopus)

Abstract

Purpose: Health-care practitioners’ (HCPs) preferences for returning secondary findings (SFs) will influence guideline compliance, shared decision-making, and patient health outcomes. This study aimed to estimate HCPs’ preferences and willingness to support the return (WTSR) of SFs in Canada.

Methods: A discrete choice experiment estimated HCPs’ preferences for the following attributes: disease risk, clinical utility, health consequences, prior experience, and patient preference. We analyzed responses with an error component mixed logit model and predicted WTSR using scenario analyses.

Results: Two hundred fifty participants of 583 completed the questionnaire (completion rate: 42.9%). WTSR was significantly influenced by patient preference and SF outcome characteristics. HCPs’ WTSR was 78% (95% confidence interval: 74–81%) when returning SFs with available medical treatment, high penetrance, severe health consequences, and patient’s preference for return. Genetics professionals had a higher WTSR than HCPs of other types when returning SFs with clinical utility and patient preference to know. HCPs >55 years of age were more likely to return SFs compared with younger HCPs.

Conclusion: This study identified factors that influence WTSR of SFs and indicates that HCPs make tradeoffs between patient preference and other outcome characteristics. The results can inform clinical scenarios and models aiming to understand shared decision-making, patient and family opportunity to benefit, and cost-effectiveness.
Original languageEnglish
Pages (from-to)2011-2019
Number of pages9
JournalGenetics in Medicine
Volume22
Issue number12
DOIs
Publication statusPublished - Dec 2020
Externally publishedYes

Keywords

  • discrete choice experiment
  • next-generation sequencing
  • secondary findings
  • precision medicine
  • shared decision making
  • shared decision-making

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