Back to Search
Start Over
Hypertrophic cardiomyopathy genetic test reports: A qualitative study of patient understanding of uninformative genetic test results
- Source :
- Journal of Genetic Counseling. 28:1087-1097
- Publication Year :
- 2019
- Publisher :
- Wiley, 2019.
-
Abstract
- 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.
- Subjects :
- Male
medicine.medical_specialty
Genetic counseling
MEDLINE
Genetic Counseling
03 medical and health sciences
0302 clinical medicine
medicine
Humans
Family
Genetic Testing
Qualitative Research
Genetics (clinical)
Genetic testing
0303 health sciences
Recall
medicine.diagnostic_test
030305 genetics & heredity
Professional-Patient Relations
Cardiomyopathy, Hypertrophic
Middle Aged
Test (assessment)
Comprehension
030220 oncology & carcinogenesis
Medical genetics
Female
Psychology
Clinical psychology
Qualitative research
Subjects
Details
- ISSN :
- 15733599 and 10597700
- Volume :
- 28
- Database :
- OpenAIRE
- Journal :
- Journal of Genetic Counseling
- Accession number :
- edsair.doi.dedup.....39f482d26b73e090e347a9e847eda332