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What information do cancer genetic counselees prioritize?
Afsaneh Hayat Roshanai1, Claudia Lampic, Charlotta Ingvoldstad
1Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden. afsaneh.roshanai@pubcare.uu.se
Journal of Genetic Counseling
|October 14, 2011
Summary
Individuals attending genetic counseling for hereditary cancer have varied needs, including facts, communication, and support. Understanding these diverse patient concerns, like risk estimation and decision involvement, improves counseling effectiveness.
Area of Science:
- Medical Genetics
- Psychosocial Oncology
Background:
- Hereditary cancer genetic counseling addresses complex patient needs.
- Understanding counselee expectations is crucial for effective support.
Purpose of the Study:
- To explore and categorize the informational needs of individuals undergoing genetic counseling for hereditary cancer.
- To identify key factors influencing counselee expectations prior to genetic counseling sessions.
Main Methods:
- Utilized a mixed-methods approach combining free-choice (QUOTE-gene (ca) questionnaire) and forced-choice (Q-methodology) assessments.
- Surveyed 334 individuals attending genetic counseling in Sweden and Norway.
- Analyzed data to identify distinct groups of counselee needs.
Main Results:
- Counselees prioritized needs such as being taken seriously, accurate risk estimation, medical/genetic information, and involvement in decision-making.
- Key needs included caring communication, skilled counselors, and support for communicating genetic information.
- Identified five distinct groups of counselee needs, highlighting variations based on individual backgrounds.
Conclusions:
- Counselee needs in hereditary cancer genetic counseling are diverse and influenced by medical and demographic factors.
- Tailoring counseling approaches to individual needs, identified through methods like QUOTE-gene (ca), can enhance session effectiveness.
- Increased insight into specific patient concerns is vital for optimizing the genetic counseling experience.
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