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Creating genetic reports that are understood by nonspecialists: a case study.

ABSTRACT: PURPOSE:Guidelines recommend that genetic reports should be clear to nonspecialists, including patients. We investigated the feasibility of creating reports for cystic fibrosis carrier testing through a rapid user-centered design process that built on a previously developed generic template. We evaluated the new reports' communication efficacy and effects on comprehension against comparable reports used in current clinical practice. METHODS:Thirty participants took part in three rounds of interviews. Usability problems were identified and rectified in each round. One hundred ninety-three participants took part in an evaluation of the resulting reports measuring subjective comprehension, risk probability comprehension, perceived communication efficacy, and other factors, as compared with standard reports. RESULTS:Participants viewing the user-centered reports rated them as clearer, easier to understand, and more effective at communicating key information than standard reports. Both groups ended up with equivalent knowledge of risk probabilities, although we observed differences in how those probabilities were perceived. CONCLUSION:Our findings demonstrate that by starting with a patient-friendly generic report template and modifying it for specific scenarios with a rapid user-centered design process, reports can be produced that are more effective at communicating key information. The resulting reports are now being implemented into clinical care.

SUBMITTER: Recchia G

PROVIDER: S-EPMC7000324 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Creating genetic reports that are understood by nonspecialists: a case study.

Recchia Gabriel G Chiappi Antonia A Chandratillake Gemma G Raymond Lucy L Freeman Alexandra L J ALJ

Genetics in medicine : official journal of the American College of Medical Genetics 20190911 2

<h4>Purpose</h4>Guidelines recommend that genetic reports should be clear to nonspecialists, including patients. We investigated the feasibility of creating reports for cystic fibrosis carrier testing through a rapid user-centered design process that built on a previously developed generic template. We evaluated the new reports' communication efficacy and effects on comprehension against comparable reports used in current clinical practice.<h4>Methods</h4>Thirty participants took part in three r ...[more]

PMID: 31506646

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Project description:ObjectivesTo compare the frequency of discrepancies in retracted reports of clinical trials with those in adjacent unretracted reports in the same journal.DesignBlinded case-control study.SettingJournals in PubMed.Population50 manuscripts, classified on PubMed as retracted clinical trials, paired with 50 adjacent unretracted manuscripts from the same journals. Reports were randomly selected from PubMed in December 2012, with no restriction on publication date. Controls were the preceding unretracted clinical trial published in the same journal. All traces of retraction were removed. Three scientists, blinded to the retraction status of individual reports, reviewed all 100 trial reports for discrepancies. Discrepancies were pooled and cross checked before being counted into prespecified categories. Only then was the retraction status unblinded for analysis.Main outcome measureTotal number of discrepancies (defined as mathematically or logically contradictory statements) in each clinical trial report.ResultsOf 479 discrepancies found in the 100 trial reports, 348 were in the 50 retracted reports and 131 in the 50 unretracted reports. On average, individual retracted reports had a greater number of discrepancies than unretracted reports (median 4 (interquartile range 2-8.75) v 0 (0-5); P<0.001). Papers with a discrepancy were significantly more likely to be retracted than those without a discrepancy (odds ratio 5.7 (95% confidence interval 2.2 to 14.5); P<0.001). In particular, three types of discrepancy arose significantly more frequently in retracted than unretracted reports: factual discrepancies (P=0.002), arithmetical errors (P=0.01), and missed P values (P=0.02). Results from a retrospective analysis indicated that citations and journal impact factor were unlikely to affect the result.ConclusionsDiscrepancies in published trial reports should no longer be assumed to be unimportant. Scientists, blinded to retraction status and with no specialist skill in the field, identify significantly more discrepancies in retracted than unretracted reports of clinical trials. Discrepancies could be an early and accessible signal of unreliability in clinical trial reports.

Dataset Information

Creating genetic reports that are understood by nonspecialists: a case study.

Publications

Creating genetic reports that are understood by nonspecialists: a case study.

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