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Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results.

ABSTRACT: Eliciting and understanding patient and research participant preferences regarding return of secondary test results are key aspects of genomic medicine. A valid instrument should be easily understood without extensive pretest counseling while still faithfully eliciting patients' preferences.We conducted focus groups with 110 adults to understand patient perspectives on secondary genomic findings and the role that preferences should play. We then developed and refined a draft instrument and used it to elicit preferences from parents participating in a genomic sequencing study in children with intellectual disabilities.Patients preferred filtering of secondary genomic results to avoid information overload and to avoid learning what the future holds, among other reasons. Patients preferred to make autonomous choices about which categories of results to receive and to have their choices applied automatically before results are returned to them and their clinicians. The Preferences Instrument for Genomic Secondary Results (PIGSR) is designed to be completed by patients or research participants without assistance and to guide bioinformatic analysis of genomic raw data. Most participants wanted to receive all secondary results, but a significant minority indicated other preferences.Our novel instrument-PIGSR-should be useful in a wide variety of clinical and research settings.Genet Med 19 3, 337-344.

SUBMITTER: Brothers KB

PROVIDER: S-EPMC5326612 | biostudies-other | 2017 Mar

REPOSITORIES: biostudies-other

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Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results.

Brothers Kyle B KB East Kelly M KM Kelley Whitley V WV Wright M Frances MF Westbrook Matthew J MJ Rich Carla A CA Bowling Kevin M KM Lose Edward J EJ Bebin E Martina EM Simmons Shirley S Myers John A JA Barsh Greg G Myers Richard M RM Cooper Greg M GM Pulley Jill M JM Rothstein Mark A MA Clayton Ellen Wright EW

Genetics in medicine : official journal of the American College of Medical Genetics 20160825 3

<h4>Purpose</h4>Eliciting and understanding patient and research participant preferences regarding return of secondary test results are key aspects of genomic medicine. A valid instrument should be easily understood without extensive pretest counseling while still faithfully eliciting patients' preferences.<h4>Methods</h4>We conducted focus groups with 110 adults to understand patient perspectives on secondary genomic findings and the role that preferences should play. We then developed and refi ...[more]

PMID: 27561086

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Project description:BackgroundWith the accumulation of evidence regarding potential harms of cancer screening in recent years, researchers, policy-makers, and the public are becoming more critical of population-based cancer screening. Consequently, a high-quality cancer screening program should consider individuals’ values and preferences when determining recommendations. In cervical cancer screening, offering women autonomy is considered a “person-centered” approach to health care services; however, it may impact the effectiveness of the program should women choose to not participate. As part of a larger project to investigate women’s cervical screening preferences and correlates of these preferences, this systematic review will capture quantitative and qualitative investigations of women’s cervical screening preferences and the methods used to elicit them.Design and methodsThis mixed methods synthesis will use a thematic analysis approach to synthesize qualitative, quantitative, and mixed methods evidence. This protocol describes the methods that will be used in this investigation. A search strategy has been developed with a health librarian and peer reviewed using PRESS. Based on this strategy, five databases and the gray literature will be searched for studies that meet the inclusion criteria. The quality of the included individual studies will be examined using the Mixed Methods Appraisal Tool. Three reviewers will extract data from the primary studies on the tools or instruments used to elicit women’s preferences regarding cervical cancer screening, theoretical frameworks used, outcomes measured, the outstanding themes from quantitative and qualitative evidence, and the identified preferences for cervical cancer screening. We will describe the relationships between study results and the study population, “intervention” (e.g., tool or instrument), and context. We will follow the PRISMA reporting guideline. We will compare findings across studies and between study methods (e.g., qualitative versus quantitative study designs). The strength of the synthesized findings will be assessed using the validated GRADE and CERQual tool.DiscussionThis review will inform the development of a tool to elicit women’s cervical screening preferences. Understanding the methods used to elicit women’s preferences and what is known about women’s cervical screening preferences will be useful for guideline developers who wish to incorporate a woman-centered approach specifically for cervical screening guidelines.Systematic review registrationPROSPERO CRD42016035737Electronic supplementary materialThe online version of this article (doi:10.1186/s13643-016-0310-9) contains supplementary material, which is available to authorized users.

Project description:BackgroundWe evaluate the construct validity of a proposed procedure for eliciting lay preferences among health care policy options, suited for structured surveys. It is illustrated with breast cancer screening, a domain in which people may have heterogeneous preferences.MethodsOur procedure applies behavioral decision research principles to eliciting preferences among policy options expressed in quantitative terms. Three-hundred women older than 18 y without a history of breast cancer were recruited through Amazon MTurk. Participants evaluated 4 screening options for each of 4 groups of women, with varying risk of breast cancer. Each option was characterized by estimates of 3 primary outcomes: breast cancer deaths, false alarms, and overdiagnosis resulting in unnecessary treatment of cancers that would not progress. These estimates were based on those currently being developed by the Breast Cancer Surveillance Consortium. For each risk group, participants stated how frequently they would wish to receive screening, if the predicted outcomes applied to them.ResultsA preregistered test found that preferences were robust enough to be unaffected by the order of introducing and displaying the outcomes. Other tests of construct validity also suggested that respondents generally understood the task and expressed consistent preferences. Those preferences were related to participants' age and mammography history but not to measures of their numeracy, subjective numeracy, or demographics. There was considerable heterogeneity in their preferences.ConclusionsMembers of the public can be engaged more fully in informing future screening guidelines if they evaluate the screening options characterized by the expected health outcomes expressed in quantitative terms. We offer and evaluate such a procedure, in terms of its construct validity with a diverse sample of women.HighlightsA novel survey method for eliciting lay preferences for breast cancer screening is proposed and evaluated in terms of its construct validity.Participants were generally insensitive to irrelevant task features (e.g., order of presentation) and sensitive to relevant ones (e.g., quantitative estimates of breast cancer risk, harms from screening).The proposed method elicits lay preferences in terms that can inform future screening guidelines, potentially improving communication between the public and policy makers.

Dataset Information

Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results.

Publications

Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results.

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