Key result
Among 15 participants with hypertrophic cardiomyopathy, laboratory reports and physician-directed result letters did not help them understand uninformative genetic test results.
Why the study?
Patients with hypertrophic cardiomyopathy may misinterpret uninformative genetic testing results as ruling out a genetic etiology and family risk, potentially due to poor comprehension of the laboratory report.
Do current laboratory genetic test reports and physician-directed result letters improve patient understanding of uninformative genetic test results in patients with hypertrophic cardiomyopathy?
Do current laboratory genetic test reports and physician-directed result letters improve patient understanding of uninformative genetic test results in patients with hypertrophic cardiomyopathy?
Answers are grounded in this paper and cite their sources.
Current laboratory reports and physician-directed letters for uninformative genetic test results in HCM are poorly understood by patients, highlighting the need for personalized, patient-directed supplemental reports.
Studies have shown that patients with hypertrophic cardiomyopathy (HCM) may misinterpret the meaning of uninformative genetic testing results to mean that a genetic etiology and family members' risk is ruled out. We hypothesized that poor comprehension of the laboratory genetic test report may contribute to this misunderstanding. We conducted a qualitative study to examine patient understanding of uninformative laboratory results and reports and elicit suggestions for an improved report. Fifteen participants with HCM were interviewed after undergoing genetic testing and receiving their report. While all patients read the report, most participants reported only partially reading it. Most reported not understanding the report at all or only partially understanding it because a provider explained it to them. Some participants said that the report was helpful for understanding their result, but there was evidence of misunderstanding; most participants stated that specific aspects of the report were unhelpful. While most of our participants communicated risk with relatives, none said that the report helped with the communication. Most participants did not recall or find the accompanying physician-directed result letter useful for their understanding or familial communication. Many participants expressed need for a supplemental report that illustrates a personalized clinical 'action plan' that could summarize clinical and familial implications of the result for the patient and their family. We conclude that laboratory reports and physician-directed result letters did not help participants understand their results or their familial implications. Our results suggest opportunities for research to explore the utility of a patient-directed result supplement to improve patient comprehension of genetic test results and outline clinical recommendations via a patient action plan.
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Nightingale et al. (2019) studied Hypertrophic cardiomyopathy (n=15). Laboratory genetic test reports and physician-directed result letters was evaluated on Patient understanding of uninformative laboratory results and reports. Among 15 participants with hypertrophic cardiomyopathy, laboratory reports and physician-directed result letters did not help them understand uninformative genetic test results.
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