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Published on: May 12, 2023
Translating advances in cardiogenetics into effective clinical practice
Louise Bordeaux Silverstein1, Marina Stolerman2, Nadia Hidayatallah2
1Yeshiva University, Bronx, New York, USA louisesilverstein@gmail.com.
Many patients struggle to understand genetic testing and cardiac disease information, leading to anxiety and confusion. Improving physician-patient communication is key for better care of genetic conditions.
Area of Science:
- Cardiology
- Genetics
- Medical Sociology
Background:
- Cardiogenetic disorders require complex genetic testing.
- Patient understanding and experience are crucial for effective management.
- Qualitative research can illuminate subjective patient experiences.
Purpose of the Study:
- To explore individuals' subjective experiences with genetic testing.
- To understand patient perspectives on cardiogenetic disorders.
- To identify barriers and facilitators in clinical care for these conditions.
Main Methods:
- Qualitative research study.
- Grounded theory approach.
- Analysis of interview and focus group transcripts from 50 participants.
Main Results:
- Nearly half of diagnosed participants had difficulty understanding genetic testing and cardiac disease information.
- Anxiety regarding testing and symptoms worsened cognitive confusion.
- Patient interactions with healthcare professionals varied based on provider knowledge.
Conclusions:
- Effective clinical care for genetic conditions faces significant barriers.
- Patient attitudes toward genetic testing are diverse (positive, negative, ambivalent).
- Enhanced collaborative decision-making between physicians and patients is recommended.
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