1. Recruiting Diverse Populations to a Study Assessing Perceptions of Breast Cancer Genetic Research: Lessons Learned
Colleen Bauza, MPH
Department of Public Health Sciences
Medical University of South Carolina (MUSC)

2. Background
The purpose of cancer genetic research (CGR) is to understand the genetic basis of cancer susceptibilities and genetic factors that contribute to racial/ethnic disparities
The current trend toward precision medicine approaches in cancer care relies heavily on CGR
Given this focal shift from “one-size-fits all” to more tailored cancer care, it is imperative to include diverse groups of individuals in CGR.

3. Background Breast CGR is important because:
Breast cancer is the most common form of cancer in women and second overall leading cause of death among women in the United States
Despite having similar breast cancer incidence rates, African American (AA) women have a much higher breast cancer mortality rate compared to non-Hispanic White (NHW) women
Decided to focus on breast cancer genetic research because
Breast cancer is the most common form of cancer in women and second overall leading cause of death among women in the United States (McPherson, Steel, & Dixon, 2000; National Cancer Institute, 2016; US Department of Health and Human Services, 2016).
While non-Hispanic white women (NHW) have a higher incidence of breast cancer than African American (AA) women, AA women have a much higher breast cancer mortality rate than NHW women (National Cancer Institute, 2016). This contradictory disparity is in part explained by the greater AA risk for breast cancer of poor prognosis.

4. Statement of the Problem
Racial/ethnic minorities account for ~35% of the US population
However, members of these groups are underrepresented in CGR
AA women are not adequately represented in breast CGR despite their significantly higher breast cancer mortality rates compared to NHWs
Without the inclusion of adequate numbers of racially/ethnically diverse participants, CGR results will not be:
generalizable to all racial/ethnic groups,
equitable in the provision of health care, or
accurate in terms of racial/ethnic-specific analyses
In terms of the statement of the problem…
Members of these groups are underrepresented in all cancer research despite cancer type
For example, AAs are not adequately represented in breast CGR despite their significantly higher breast cancer death rates compared to NHWs. Despite exciting new-targeted medical therapies being tested for breast cancer, many women are not fully participating in these opportunities.

5. Objective
To describe the outcomes of two different strategies to recruit Non-Hispanic white and African American women of varied income levels to a study assessing their knowledge, attitudes, beliefs, and perceptions toward CGR

6. Methods
The MUSC Hollings Cancer Center (HCC) Protocol Review Committee approved the protocol on February 21, 2014
The MUSC IRB approved the protocol on September 2, 2014
The MUSC IRB required use of an opt-in strategy where potential participants had to initiate contact with the investigators
For this study, IRB required that we utilize an opt in strategy where the participants had to initiate contact

7. Study Design
60 semi-structured interviews with 30 NHW women (15 high income, 15 low income) and 30 AA women (15 high income, 15 low income)
After completing 15 interviews, we conducted a preliminary review of the data and concluded that due to repeated statements by multiple participants, only 40 interviews would be required
20 NHW women (10 high income, 10 low income)
20 AA women (10 high income, 10 low income)
We were reaching data saturation among responses so we lowered the denominator to 40 women total: 20 NHW (10 low 10 high) and 20 AA (10 high 10 low)

8. Eligibility Criteria
Participants met all of the following eligibility criteria:
Women
Aged 40 years or older
Self-identified as either NHW or AA
Had a screening mammogram at one of the three MUSC HCC clinics within the last year (i.e., Downtown Charleston, Mt. Pleasant, and North Charleston)
No prior history of BC
Willing to disclose their annual household income
3 HCC clinics (one in N Charleston, Mt Pleasant, and downtown)
Two recruitment strategies were used for this study (each will described briefly)

9. Recruitment Strategy 1 (RS 1): Methods
300 flyers were strategically placed in the MUSC-HCC clinics
Strategically meaning that we had cooperation and assistance from clinic staff to place them in the waiting rooms and dressing rooms
To attempt to obtain buy in from the three HCC clinics, I delivered stacks of cards to each clinic in addition to baskets of snacks and treats to the staff
I asked clinic staff to place the cards in the changing rooms and in the waiting rooms in hopes to attract participants’ eyes

10. RS 1: Methods
Women who were interested in participating called the PI to complete an eligibility screener
Women who met the eligibility criteria were asked to participate in a one-time, semi-structured, telephone- administered interview
The interview took an average of 45 minutes to complete
the interview took 45 minutes on average to administer

11. RS 1: Results RS 1 began in January 2015 and ended in June 2016
Number of participants
RS 1: Results
RS 1 began in January and ended in June 2016
From this strategy, (7 AA, 4 NHW) women completed interviews
Race and ethnicity, determined via telephone-administered eligibility screener, were unable to be evaluated for these women who were unable to contact
Transition: I would now like to turn our attention to the methods for the second recruitment strategy

12. Recruitment Strategy 2 (RS 2): Methods
To supplement the low accrual rates from RS 1, we submitted a SPARC request to query the MUSC Epic system to pre-screen women who received a mammogram from one of the three MUSC HCC clinics and who potentially met the eligibility criteria
The SPARC data included: race/ethnicity, age, gender, breast cancer screening date (January 1-December 31, 2014), personal breast cancer history
However, individual-level data for these variables were not included in the dataset we received
The SPARC request yielded > 8,500 names of potential participants
By march of 2015, we were not seeing the accrual rates we were initially expecting with the flyers so we decided to contact SPARC
In the SPARC request, we included our eligibility criteria however the results did not include the racial/ethnic group that each woman identified nor did we have income level (limitation of this approach)
If eligible these women were offered the opportunity to participate in the study

13. RS 2: Methods
We then created random samples of 50 women and mailed letters to them describing the study
150 letters were mailed in total
Women who received the letter and were interested in participating called the PI to complete an eligibility screener
Women who met the eligibility criteria were asked to participate in a one-time, semi-structured, telephone- administered interview
In the SPARC request, we included our eligibility criteria however the results did not include the racial/ethnic group that each woman identified nor did we have income level (limitation of this approach)
If eligible these women were offered the opportunity to participate in the study

14. RS 2: Results RS 2 began in June 2015 and ended in June 2016
Number of participants
RS 2: Results
RS 2 began in June and ended in June 2016
From this strategy, 21 (10 AA, 11 NHW) women completed interviews
If eligible these women were offered the opportunity to participate in the study
We were limited to 3 call backs based on IRB approval

15. Conclusions
Using RS 1 and RS 2, 80% of our recruitment goal of 40 participants was achieved
Slightly more than half of the enrolled participants were AA (53.1%)
RS 2 resulted in almost twice the number of recruited participants than RS 1 over a shorter period of time
Using a focused recruitment approach such as the pre- screening strategy employed in RS 2 could bolster participation rates in future CGR studies
Wanted 40 interviews and we got 32 total (80%)
Shorter amount of time RS1 started Jan 2015-June 2016 (1.5 yrs) and RS 2 went from June 2015-June 2016 (1 yr)

16. Research-Related Needs
For RS 1, it would have been beneficial to have a ‘clinical champion’ in each of the MUSC HCC screening clinics
For RS 2, it would have been helpful to collaborate with a Geographic Information Systems’ specialist
The SPARC request was helpful. However, receiving individual-level data in the final SPARC dataset we received would have focused and expedited the recruitment process
Clinical champion could have helped promote women to take a card and speak a little more about the study with them at their appts
GIS specialist could have helped with creating blocks of random samples by income area using zip codes around the Charlesotn area that match a certain SES
Did not go back to SPARC for them to merge the infromation that we wanted (race) because it took > 3 months for the initial request to be processed
Future collaboration with MUSC HCC Breast & Ovarian Cancer research group (this may be of interest to them)

17. Thank You Dr. Marvella E. Ford, PhD
Funding Source: NIH 3P20CA S1