Dataset Information

Challenges to informed consent for exome sequencing: A best-worst scaling experiment.

ABSTRACT: As exome sequencing expands as a diagnostic tool, patients and providers have voiced concerns about communicating the breadth and scope of potential results when obtaining informed consent. This study aimed to understand how genetic counselors prioritize essential components of the informed consent process and whether counselor factors influence these decisions. Development of a best-worst scaling experiment was informed by a systematic literature review and two focus groups. In all, 11 choice sets were created using a balanced incomplete block design, where participants selected the most and least important object in each set. Mean best-worst (BW) scores were calculated to summarize the relative importance of each object, and mediation analyses assessed whether responses were associated with genetic counselor factors and attitudes. In all, 342 members of the National Society of Genetic Counselors completed the online survey. Ranking of BW scores suggests that participants prioritize collaborative decision-making, assessing understanding and managing expectations, with the least emphasis placed on discussing technological complexities. Stratified analyses found that counselors more experienced with obtaining informed consent for exome sequencing and those reporting higher perceptions of patients' ability to manage information rated discussing variants of uncertain significance as significantly more important (p < .05). Our results suggest that genetic counselors report intentions to prioritize individual patient needs when obtaining informed consent for exome sequencing. Professional characteristics and attitudes may influence preemptive discussion of uncertain results.

SUBMITTER: Gore RH

PROVIDER: S-EPMC7422696 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Challenges to informed consent for exome sequencing: A best-worst scaling experiment.

Gore Rachel H RH Bridges John F P JFP Cohen Julie S JS Biesecker Barbara B BB

Journal of genetic counseling 20190925 6

As exome sequencing expands as a diagnostic tool, patients and providers have voiced concerns about communicating the breadth and scope of potential results when obtaining informed consent. This study aimed to understand how genetic counselors prioritize essential components of the informed consent process and whether counselor factors influence these decisions. Development of a best-worst scaling experiment was informed by a systematic literature review and two focus groups. In all, 11 choice s ...[more]

PMID: 31553105

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Project description:ObjectiveThis article employs a best-worst scaling (BWS) experiment to identify the claims-based outcomes that matter most to patients and other relevant parties when evaluating pediatric antipsychotic monitoring programs in the United States.Data sourcesPatients and relevant parties, with pediatric antipsychotic oversight and treatment experience, completed a BWS experiment, including policymakers (n = 31), foster care alumni (n = 28), caseworkers (n = 23), prescribing clinicians (n = 32), and caregivers (n = 18).Study designRespondents received surveys with a scenario on antipsychotic monitoring programs and ranked 11 candidate claims-based outcomes as most and least important for program evaluation.Data analysisStratified by respondent group, best-worst scores were calculated to identify the relative importance of the claims-based outcomes. A conditional logit examined whether candidate outcomes for safety, quality, and unintended consequences were preferred over reduction in antipsychotic treatment, the outcome used most often to evaluate antipsychotic monitoring programs.Principal findingsSafety indicators (eg, antipsychotic co-pharmacy, cross-class polypharmacy, higher than recommended doses) ranked among the top three candidate outcomes across respondent groups and were an important complement to antipsychotic treatment reduction. Foster care alumni prioritized "antipsychotic treatment reduction" and "increased psychosocial treatment." Caseworkers, prescribers, and caregivers prioritized "increased follow-up after treatment initiation." Potential unintended consequences of an antipsychotic monitoring program ranked lowest, including increased use of other psychotropic medication classes (as a substitute), increased psychiatric hospital stays, and increased emergency room utilization. Results of the conditional logit model found only caregivers significantly preferred other indicators over antipsychotic treatment reduction, preferring improvements in follow-up care (5.78) and psychosocial treatment (4.53) and reduction in prescriptions of higher than recommended doses (3.64).ConclusionsThe BWS experiment supported rank ordering of candidate claims-based outcomes demonstrating the opportunity for future studies to align outcomes used in antipsychotic monitoring program evaluations with community preferences, specifically by diversifying metrics to include safety and quality indicators.

Dataset Information

Challenges to informed consent for exome sequencing: A best-worst scaling experiment.

Publications

Challenges to informed consent for exome sequencing: A best-worst scaling experiment.

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