Culturally Adapting an Intervention to Increase Genetic Testing in African American Cancer Survivors

Intention to undergo genetic counseling and testing

This 2-item measure assesses participant's intentions to undergo genetic counseling and testing (Yes or No)

Time frame: 1 day Pre Intervention to 1 day Post Intervention

Sharing Your Results

This author-developed 3-item measure assesses the extent to which participants shared information from (1) the video, (2) their counseling appointment, or (3) their testing results with their family. Each item is scored individually as binary (Yes or No) with yes=sharing and no=did not share.

Time frame: 3 month follow up

Major Experiences of Discrimination

This 18-item measure assesses whether participants have had 9 major experiences of discrimination (e.g., getting employment, housing, medical care) happen to them (responses: 1=once, 2=2-3 times, 3=4+ times, or 0=never happened). Responses (range 0-27) are summed into an Experiences score with higher score = greater experiences of racism. If participants who respond (1, 2, 3), for any item, they are asked to report the last time this happened (1=past week, 2=past month, 3=past year, 4=more than a year ago). These responses are averaged to create a Frequency score (range 1-4), which is multiplied by the Experiences scores to obtain a Severity score (range 9-108) with higher scores = higher severity of major experiences of discrimination experiences. The Experiences and Severity scores will be assessed as moderators of change in the primary outcomes.

Time frame: 1 day prior to intervention

Everyday Experiences of Discrimination

This 5-item scale measure assesses experience of discrimination that participants might experience on daily basis (e.g., poor service in a restaurant, getting harassed). Responses are (1=almost everyday, 2=at least once a week, 3=a few times a month, 4=a few times a year, 5=less than once a year, 6=never). Responses (range 5-30) are summed, and all items are when reverse scored, higher scores = greater experiences of everyday discrimination. This measure will be assessed as a moderator of change in the primary outcomes. For item with a score of 1-4, participants are asked to name the main reason for the discrimination (examples: ancestry or national origin, gender, race, age, religion, weight). This item is described qualitatively.

Time frame: 1 day prior to intervention

Interpersonal Processes of Care Survey

This 13-item scale is designed to measure race-specific perceptions of communication between patient and healthcare providers (e.g., compassion, discrimination, and disrespectful office space). Responses are (1=never, 2=rarely, 3=sometimes, 4=usually, 5=always). The first 9 items (mean range 1-5) with higher scores=higher levels of compassion and (reverse scored) lower discrimination. The next 4 items (mean range 1-5) with higher scores=higher disrespectful attitudes from office staff. The two subscales will be assessed as moderators of change in the primary outcomes

Time frame: 1 day prior to intervention

Group-Based Medical Mistrust Scale

This 12-item scale was developed to measure race-based medical mistrust: the suspicion of mainstream health care systems and professionals and the treatment provided to individuals because they are African American. The items are scored with responses (1=strongly disagree, 2=disagree, 3=neither agree or disagree, 4=agree, 5=strongly agree). Higher scores (mean range 1-5)=higher levels of mistrust of providers. This measure will be assessed as a primary outcome of the intervention

Time frame: 1 day prior to intervention

Perceived Access to Health Care Services

This 13-item, 4-point Likert-style scale was designed to measure perceptions of ability to get care, considering barriers such as cost, availability, and cultural fit. The scale includes items on cost and access to services. The responses are (1=strongly disagree., 2=disagree, 3=agree, 4=strongly agree) with a mean range of 1-4. Higher score=greater participation in cancer screening and a higher family income level.

Time frame: 1 day prior to intervention

Perceived risk of carrying genetic mutation

This 1-item measure ("How likely do you think it is that you carry a genetic mutation that increases your risk for cancer?") assesses perceived risk of carrying a genetic mutation that increases risk for cancer. The item is scored (1=not at all to 5=extremely likely; range 1-5). Higher scores=higher perceived likelihood of carrying a genetic mutation.

Time frame: 1 day Pre Intervention to 1 day Post Intervention

Attitudes about genetic counseling and testing

This 8-item scale is designed to measure positive and negative attitudes about the genetic counseling and testing process using the following 8 adjectives: worthwhile, worrying, reassuring, uncomfortable, wise, healthy, unpleasant, and important. Responses are (1=strongly disagree, 2=disagree, 3=neither agree nor disagree, 4=agree, 5=strongly agree). Higher summed scores (range is 8-40)=more positive attitudes.

Time frame: 1 day Pre Intervention to 1 day Post Intervention

Behavioral beliefs about genetic counseling

This 30-item scale measures genetic counseling-related beliefs and concerns across the following 6 subscales: "pros" of genetic counseling, "cons" of genetic counseling, competing concerns, cultural concerns, logistic concerns, and desire for more information. The responses are (1=strongly disagree, 2=moderately disagree, 3=neither agree nor disagree, 4=moderately agree, 5=strongly agree). Higher scores (range 15-75)=more positive beliefs.

Time frame: 1 day Pre Intervention to 1 day Post Intervention

Perceived norms

This 10-item measure assesses injunctive and descriptive norms (5 items each) about genetic counseling. Responses are scored on a 5-point Likert scale (1=strongly disagree, 2=disagree, 3=neither agree nor disagree, 4=agree, 5=strongly agree). Higher scores (range 1=25)=stronger perceived norms for each of the subscales ((injunctive norms and descriptive norms, respectively).

Time frame: 1 day Pre Intervention to 1 day Post Intervention

Knowledge of Genetic Counseling

This 5-item scale is designed to evaluate an individual's basic knowledge of the genetic counseling process (e.g., How much have you read or heard about genetic counseling for: inherited disease? Cancer, in general?). Items are scored (1=very much to 7=not at all). (Reversed) Higher scores (mean range 1-7)=higher knowledge of genetic counseling.

Time frame: 1 day Pre Intervention to 1 day Post Intervention

Perceived self-Efficacy

This 10-item measure assesses participant's perceived self-efficacy for pursuing genetic counseling if they were interested. Responses are (1=strongly disagree, 2=disagree, 3=neither agree nor disagree, 4=agree, 5=strongly agree). Higher scores (mean range=1-5)=higher self efficacy for pursuing genetic counseling.

Time frame: 1 day Pre Intervention to 1 day Post Intervention

Multidimensional Impact of Cancer Risk Assessment

This 25-item scale is designed to evaluate participant emotional responses after genetic testing, regardless of result, across 3 subscales (Distress, Uncertainty, and Positive Experiences-reverse scored). The responses are 0=never, 1=rarely, 3=sometimes, 5=often. Total summed score range=0-95. Higher scores=stronger emotional impact of testing results on the individual. The measure will be assessed as part of the intervention outcomes.

Time frame: 3 month Follow Up

Cancer Family Impact

This 18-item scale is designed to measure the flow of information and communication about cancer in families, thoughts about family norms about cancer prevention, and the effects of cancer on families across 5 subscales (Flow: flow of information about cancer in families; Negative: negative effects of cancer on the family; Positive: positive effects of cancer on the family; Communicate: how families communicate with each other about cancer; and Norm: reaction to family norms about cancer prevention). The responses are (0=strongly disagree, 1=disagree, 2= neither agree or disagree, 3=agree 4= strongly agree). Higher total (range 0-90) summed scores=greater communication about cancer within the family. The measure will be assessed as part of the intervention

Time frame: 3 Month Follow Up