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| ID | Type | Description | Link |
|---|---|---|---|
| Nurse Faculty Scholar 68039 | Other Grant/Funding Number | Robert Wood Johnson Foundation |
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Mutations in the BRCA1/2 genes are the primary cause of hereditary breast/ovarian cancer syndrome. Genetic testing identifies mutation carriers and enables them to manage their cancer risk (i.e. chemoprevention, risk-reducing surgery, or intensive surveillance). However, uptake of genetic testing among at-risk individuals is low, implying that information about the disease and genetic testing is not being communicated effectively among family members. Mutation carriers are distressed about disclosing test results, while their relatives do not understand the implications of a positive test result for their own health. Thus, interventions that support family communication about genetic risk, and address psychological distress of family members could contribute to more effective management of hereditary breast/ovarian cancer.
The project aims to develop a family communication and decision-support intervention to 1) increase family communication about BRCA1/2 mutations; 2) reduce psychological distress associated with these mutations; and 3) increase informed decision-making regarding uptake of BRCA1/2 testing among at-risk family members. Focus groups with mutation carriers and at-risk relatives will inform the refinement of the intervention, as well as timing and mode of delivery. Two group, pre-post test study with a new sample of mutation carriers and family members will be used to test the feasibility, acceptability, and effect of the intervention.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Family Gene Toolkit | Experimental | Psychosocial educational presentations over the Internet (Webinars) Two Webinars lasting 1 hour each One follow-up phone call lasting 20 minutes |
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| Delayed Family Gene Toolkit | Active Comparator | Psychosocial educational presentations over the Internet (Webinars) Two Webinars lasting 1 hour each One follow-up phone call lasting 20 minutes |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Family Gene Toolkit | Behavioral | Psychosocial educational presentations over the Internet (Webinars) Two Webinars lasting 1 hour each One follow-up phone call lasting 20 minutes Webinars and phone calls are delivered to one mutation carrier and one non-tested relative Genetic counselors and nurses with master's degree and experienced in oncology deliver the content of the intervention |
| Measure | Description | Time Frame |
|---|---|---|
| Intention for genetic testing | Intention to have genetic testing | 1 month post-intervention |
| Decisional conflict for genetic testing | Difficulty deciding about having genetic testing | 1 month post-intervention |
| Decisional regret | Regret after having genetic testing | 1 month post-intervention |
| Measure | Description | Time Frame |
|---|---|---|
| Knowledge of BRCA1/2 genetics | Genetic literacy | 1 month post-intervention |
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Inclusion Criteria for mutation carrier:
Inclusion Criteria for relatives
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Maria C Katapodi, PhD | Adjunct Associate Professor w/ Tenure | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Michigan | Ann Arbor | Michigan | 48109 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 29653920 | Result | Katapodi MC, Jung M, Schafenacker AM, Milliron KJ, Mendelsohn-Victor KE, Merajver SD, Northouse LL. Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study. JMIR Cancer. 2018 Apr 13;4(1):e7. doi: 10.2196/cancer.9210. |
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Request for data, explanation of research question, and time frame
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| Delayed Family Gene Toolkit | Behavioral | Psychosocial educational presentations over the Internet (Webinars) Two Webinars lasting 1 hour each One follow-up phone call lasting 20 minutes Webinars and phone calls are delivered to one mutation carrier and one non-tested relative Genetic counselors and nurses with master's degree and experienced in oncology deliver the content of the intervention |
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