IMAGINE: Developing New Educational Materials About Genetic Testing for a Diverse Group of Cancer Patients
Genetic testing is a type of test that detects changes to the genes-the DNA instructions that are passed on from the mother and father. The results of a genetic test can confirm whether the participant has a genetic disorder, which is a disease caused in whole or in part by changes to the genes. Genetic testing can also help determine a person's chance of getting or passing on a genetic disorder. Genetic tests use a sample of blood, hair, skin, or other tissue, and they can look at one gene or multiple genes at the same time. Genetic testing may change the options for treating people with certain types of cancer. For example, some medications are more helpful for the treatment of cancer in people with certain gene changes (mutations).
The researchers are doing this study to develop new educational materials about genetic testing for people who speak different languages and have diverse cultural and educational backgrounds. During the study, the staff will interview participants with diverse cultural and educational backgrounds and ask them to review a sample of the educational materials that have been developed so far. Participants will give their opinions on these materials, and the researchers will use participants' feedback to improve the materials.
Arms and Interventions
|Breast,Ovarian, Prostate & Pancreatic Cancer|
There is no treatment or intervention for Phase 1 of this study. Participants will be asked to participate in a cognitive interview. This section will be amended to include the Phase 2 intervention information once the Phase 1 portion of the study is complete. The Phase 1 materials developed, and results obtained, will directly be part of and inform the intervention for Phase 2.
Other: Cognitive interview
Researchers will use formative methods to adapt our previously-developed mainstreaming pre-genetic test educational materials plus standard post-test clinical communication materials used by the MSK CGS for use with the diverse patients. Specifically, it will adapt these materials to be responsive to patients' linguistic and literacy needs, and sensitive to their cultural diversity.
Primary Outcome Measures
- Number of patients who complete the cognitive interview [1 year]
Age ≥ 18 years as per self-report
Current or previous diagnosis of breast, ovarian, pancreatic, or prostate cancer as per self-report
Self-identification as Black, Latino, and/or neither Black nor Latino (i.e.,non-Latino, non black)
Fluency in English, Haitian Creole, or Spanish as per self-report (for Spanish, we will attempt to recruit a cohort representing a variety of regions where Spanish is spoken, as informed by current data from participating sites, to achieve neutrality in the language)
- Individuals of impaired decision-making capacity as per a clinician's judgment.
Contacts and Locations
|1||Kings County Hopsital Center||Brooklyn||New York||United States||11203|
|2||Queens Cancer Center of Queens Hospital||Jamaica||New York||United States||11432|
Sponsors and Collaborators
- Memorial Sloan Kettering Cancer Center
- Principal Investigator: Jada Hamilton, PhD, MPH, Memorial Sloan Kettering Cancer Center
Study Documents (Full-Text)None provided.