Genetic Predisposition
Conditions
Keywords
genetic testing, cascade, family disclosure
Brief summary
Prospective cohort study to evaluate the feasibility and acceptability of using standardized educational and communication tools to assist in communication of genetic test results to family members. A pre and post test will be administered to consented patients before and after genetic counseling .
Detailed description
This will be a prospective cohort study to evaluate 1) the feasibility and acceptability of using standardized educational and communication tools to assist in communication of genetic test results to family members, 2) utility of the communication tool, and 3) the impact of a patient focused information sheet on the knowledge of genetic testing in women who attend the women's oncology clinic. Genetic counseling is recommended for all women with a diagnosis of ovarian cancer, most patients with pre-menopausal diagnosis of breast cancer, and in younger women with uterine or other gynecologic malignancies. Women with a diagnosis of breast or gynecologic cancer who elect to undergo genetic testing will be approached to participate in this study. If they consent, they will be provided with two information handouts (FORCE sharing worksheets) and family letter template. Participants will complete a baseline knowledge survey prior to receipt of these materials. At a second visit, they will complete the knowledge survey again. Knowledge surveys will be scored and pre and post test scores will be compared with a paired t-test. Feasibility will be assessed by tracking the number of patients approached to participate, the number who sign consents, and the number who complete the study.
Interventions
OTHERFeasibility and Acceptability of Genetic Counseling Materials
To determine the feasibility and acceptability of a communication aid in sharing genetic test results with family members. To determine the utility of a communication aid in sharing information. To determine the impact of patient focused information sheets on patient knowledge of genetic testing.
Sponsors
University of Virginia
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Age ≥ 18 * Diagnosis of breast or gynecologic cancer * Undergoing any genetic testing at UVA for standard clinical purposes in the Women's Oncology Clinic
Exclusion criteria
* Not receiving treatment at UVA * Not English literate * Unable to provide consent * Known pregnancy (self-reported)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| percentage of family members told in comparison to number of family members | 1 year | Evaluate the feasibility and acceptability of using standardized educational and communication tools to assist in communication of genetic test results to family members |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| To compare pre- and post test scores to accesses the gaps in traditional genetic counseling education sessions | 1 year | Evaluate the impact of a patient focused information sheet on the knowledge of genetic testing in women who attend the women's oncology clinic |
| percentage of participants that report using the intervention | 1 year | Evaluate the utility of the communication tool |
Countries
United States
Outcome results
None listed