Dataset Information

Information-seeking preferences in diverse patients receiving a genetic testing result in the Clinical Sequencing Evidence-Generating Research (CSER) study.

ABSTRACT:

Purpose

Accurate and understandable information after genetic testing is critical for patients, family members, and professionals alike.

Methods

As part of a cross-site study from the Clinical Sequencing Evidence-Generating Research consortium, we investigated the information-seeking practices among patients and family members at 5 to 7 months after genetic testing results disclosure, assessing the perceived utility of a variety of information sources, such as family and friends, health care providers, support groups, and the internet.

Results

We found that individuals placed a high value on information obtained from genetics professionals and health care workers, independent of genetic testing result case classifications as positive, inconclusive, or negative. The internet was also highly utilized and ranked. Study participants rated some information sources as more useful for positive results compared with inconclusive or negative outcomes, emphasizing that it may be difficult to identify helpful information for individuals receiving an uncertain or negative result. There were few data from non-English speakers, highlighting the need to develop strategies to reach this population.

Conclusion

Our study emphasizes the need for clinicians to provide accurate and comprehensible information to individuals from diverse populations after genetic testing.

SUBMITTER: Slavotinek A

PROVIDER: S-EPMC10524447 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature

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Publications

Information-seeking preferences in diverse patients receiving a genetic testing result in the Clinical Sequencing Evidence-Generating Research (CSER) study.

Slavotinek Anne A Prasad Hannah H Outram Simon S Scollon Sarah S Rego Shannon S Yip Tiffany T Hoban Hannah H Foreman Kate M KM Kelley Whitley W Finnila Candice C Berg Jonathan J Murali Priyanka P Bonini Katherine E KE Martin Lisa J LJ Hott Adam A

Genetics in medicine : official journal of the American College of Medical Genetics 20230519 9

<h4>Purpose</h4>Accurate and understandable information after genetic testing is critical for patients, family members, and professionals alike.<h4>Methods</h4>As part of a cross-site study from the Clinical Sequencing Evidence-Generating Research consortium, we investigated the information-seeking practices among patients and family members at 5 to 7 months after genetic testing results disclosure, assessing the perceived utility of a variety of information sources, such as family and friends, ...[more]

PMID: 37212252

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Project description:BackgroundIncreasing diversity in clinical trial participation is necessary to improve health outcomes and requires addressing existing social, structural, and geographic barriers. The Clinical Sequencing Evidence-Generating Research Consortium (CSER) included six research projects to enroll historically underrepresented/underserved (UR/US) populations in clinical genomics research. Delays and project re-designs emerged shortly after work began. Understanding common experiences of these projects may inform future trial implementation.MethodsSemi-structured interviews with six CSER principal investigators and seven project managers were performed. An interview guide included questions of research/clinical infrastructure, logistics across sites, language, communication, and allocation of grant-related resources. Interviews were recorded, transcribed verbatim; transcripts were analyzed using inductive coding, thematic analysis and consensus building.ResultsAll projects collaborating with new clinical sub-sites to recruit UR/US populations. Refining trial logistics continued long after enrollment for all projects. Themes of challenges included: sub-site customization for workflow and genetics support, conflicting input from participant advisory groups and approval bodies, developing research personnel, complex data management structures, and external changes (e.g. subcontractors ending contracts) that required redesign. Themes of beneficial lessons included: domains with prior experience were easier, develop project champions at each sub-site, structure communication within the research team, and simplify research design when possible.ConclusionsThe operational aspects of expanding clinical research into novel sub-sites are significant and require investment of time and resources. The themes arising from these interviews suggest priority areas for more quantitative analyses in the future including multi-institutional approval policies and processes, data management structures, and incremental research complexity.

Project description:BackgroundPatients' engagement in health care decision making is constituted by at least two behaviors: health information seeking and active involvement in medical decisions. Previous research reported that older adults desire a lot of information, but want to participate in decision making to a lesser degree. However, there is only limited evidence on the effect of desire for health information on seniors' perceived confidence in making an informed choice (ie, decision self-efficacy).ObjectiveThe goal of this study was to investigate the role desire for health information has for older patients. More specifically, it tested whether decision self-efficacy increases as a function of an assisted computer-based information search. Additionally, the study allowed insights into the sources seniors with hypertension prefer to consult.MethodsA sample of 101 senior citizens (aged ≥60 years) with high blood pressure in the Italian-speaking part of Switzerland answered a questionnaire before and after an informational intervention was applied. The intervention consisted of offering additional information on hypertension from five different sources and of providing the information the participant desired. Preference for receiving this information was the major independent variable. The main outcome measure was decision self-efficacy (assessed at baseline and posttest). Analyses of covariance were conducted to detect differences between and within who desired additional hypertension-related content (intervention group) and "information avoiders" (control group).ResultsHealth care professionals firmly remain the preferred and most trusted source of health information for senior patients. The second most consulted source was the internet (intervention group only). However, among the total sample, the internet obtained the lowest credibility score. A significant increase in decision self-efficacy occurred in seniors consulting additional information compared to information avoiders (F1,93=28.25, P<.001).ConclusionsConsulting health information on a computer screen, and assistance by a computer-savvy person, may be a helpful activity to increase perceived confidence in making treatment decisions in seniors with hypertension.

Dataset Information

Information-seeking preferences in diverse patients receiving a genetic testing result in the Clinical Sequencing Evidence-Generating Research (CSER) study.

Purpose

Methods

Results

Conclusion

Publications

Information-seeking preferences in diverse patients receiving a genetic testing result in the Clinical Sequencing Evidence-Generating Research (CSER) study.

Similar Datasets

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