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.
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) Fluency is defined as an answer of "well" or "very well" on the screening questions for spoken and reading ability.
Individuals of impaired decision-making capacity as per a clinician's or consenting professional's judgment.
Subjects who indicate level of fluency as "not at all" or "not well".
Individuals of impaired decision-making capacity as per a clinician's or consenting professional's judgment.
Subjects who indicate level of fluency as "not at all" or "not well".
Parallel
Cognitive interview
Other interventionResearchers 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.
LCAM intervention
BehavioralParticipants will receive adapted pretest educational materials from study staff and/or clinical staff and have testing ordered by their oncologist, followed by post-test genetic counseling via telegenetics with a health and genetic "literacy screener" and adapted clinical communication materials.
Standard of care
BehavioralParticipants will receive in-depth pre-test and post-test genetic counseling provided via telegenetics
Number of patients who complete the cognitive interview (Phase I)
the number of patients who complete the cognitive interview
Genetic test decision (Phase II) satisfaction
is measured with the validated Satisfaction with Decisions scale.
Genetic counseling satisfaction (Phase II)
is measured with the validated Genetic Counseling Satisfaction scale
Test uptake (Phase II)
the number of patients who complete multigene panel testing
Knowledge (Phase II)
measured with items from the validated KnowGene scale (scores range from 0 to 6, higher scores indicate greater knowledge)
Empowerment (Phase II)
measured with the validated Genomics Outcome Scale (scores range from 6 to 30, higher scores indicate greater empowerment)
Distress (Phase II)
measured with the validated Hospital Anxiety and Depression Scale (total scale scores range from 0 to 42, higher scores indicate greater distress)
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