Introduction
The institutionalization of clinical practices for assessing cancer risk related to
BRCA1 and BRCA2 has advanced at a rapid pace in the 15 years since these genes were discovered. New medical technologies can bring new disparities, however, and a key challenge is to ensure that these new technologies and services are accessible to medically underserved populations. We define medically underserved to include people who are low-income, low-literacy, uninsured and/or members of ethnic, racial and linguistic minority groups. While family history is a strong risk factor for breast cancer for all women, and ethnic/racial minority women are as likely as other women to have BRCA mutations, less than 10% of all women who receive BRCA testing across the US are from ethnic minority groups (Frank et al.
2002).
Several recent studies have shown disparities in awareness and uptake of BRCA testing among racial and ethnic minorities in the USA (Armstrong et al.
2005; Halbert et al.
2005; Hall and Olopade
2006; Honda
2003; Peters et al.
2004; Zimmerman et al.
2006). Among these, Armstrong et al. (
2005) in a case control study, found that African American women with a family history of breast or ovarian cancer were 78% less likely to undergo genetic counseling and BRCA testing than White women with similar family histories. Ramirez et al. (
2006) found that while Hispanic family members of breast cancer survivors “seem to have positive perceptions about genetic testing for breast cancer susceptibility” (p.398), their high interest may be driven by a lack of knowledge about the complexity of genetic testing results and implications. According to Peters et al. (
2004) the “awareness of and attitudes about predictive genetic testing for cancer risk differ by race, with lower awareness, less belief in the potential benefits of testing, and more concern about racial discrimination from genetic testing among African-Americans than Caucasians” (p.361). This echoed the findings of Thompson et al. (
2003) who identified more concerns about the disadvantages, especially potential abuses of genetic testing for cancer risk among both African Americans and Latinos.
Furthermore, recent immigration to the US and educational background can also play a role in the awareness of cancer genetic testing. The Cancer Control Supplement of the 2000 National Health Interview Survey found that of 32,000 adults, 42% reported having heard of genetic testing for cancer risk, but only 13.8% of foreign-born adults and only 29.3% of adults with high school education or less knew about genetic testing for cancer risk (Schaefer and Dunston
2006). To address these apparent disparities, a recent editorial in the
Journal of the American Medical Association recommends that interventions be designed to improve the uptake of genetic testing in underserved populations in order to fulfill its potential as a tool for effective cancer control and prevention (Huo and Olopade
2007).
Gaps in effective communication (where “effective communication” refers to instances when a message directly reaches the intended audience and where the meaning is mutually understood) (US DHHS
2000) have been widely recognized as a major element in health disparities (Thomas et al.
2004). The increasing cultural and linguistic diversity of the US population magnifies the need to address issues of culture, language, and literacy in health communications (Ad Hoc Committee on Health Literacy
1999; Williams et al.
1995). Patients with limited literacy tend to have limited health vocabulary, less basic knowledge of anatomy, and they have trouble reading health education materials, prescription labels, instructions for preoperative procedures, and consent forms required for some screening and treatment procedures (Ad Hoc Committee on Health Literacy
1999; Davis et al.
1998;
1999; Doak et al.
1998; Williams et al.
1995).
Several tools and methods have been developed to educate women with a family history of breast cancer prior to genetic counseling (Meilleur and Littleton-Kearney
2009). Some of these tools are decision aids, and thus serve the dual purpose of educating patients and helping them to make specific decisions with appropriate information and recognition of personal values. For example, these aids address decisions such as whether to have a genetic test (e.g., Green et al.
2004; Lerman et al.
1997) or whether or not to have prophylactic surgery after a BRCA positive test result (Healthwise
2007). Other tools are educational, without an explicit decision-making component, and they primarily aim to increase patient knowledge, improve accuracy of patient risk perception, reduce counselor time, and/or enable the counselor to focus on psychosocial aspects of counseling (Meilleur and Littleton-Kearney
2009). Such tools include CD-roms (Wang et al.
2005), an “information aid” consisting of a self-administered audiotape and booklet (Warner et al.
1999 and Warner et al.
2003), and a video (Cull et al.
1998).
Few education tools have been tailored or adapted for specific populations, such as those of lower literacy, or those belonging to an ethnic or racial minority group. One research team developed educational materials tailored for communication about HBOC within a large African American BRCA1 kindred (Baty et al.
2003); however, to our knowledge the implementation outcomes for these materials have not been published. Some research has shown that tailored communication for genetic risk services—including education—may be effective at increasing awareness of genetic risk (Hughes et al.
2003) and satisfaction with genetic counseling (Charles et al.
2006) among African American women. The need for further understanding of culturally appropriate risk communication and tailored education aids for genetic risk services is underscored by evidence of cultural differences in beliefs about inheritance and kinship (e.g., Chinese Australians’ belief in patrilineal descent) (Barlow-Stewart et al.
2006), and temporal orientation (i.e., the perception of events and actions in relation to past, present and future) (Edwards et al.
2008; Hughes et al.
2003).
The Cancer Risk Education Intervention Tool (CREdIT) is a novel contribution to this field. It is an educational tool tailored specifically for women of lower literacy that depicts a multi-racial Latino family and is available in English and Spanish. In contrast to tools tailored for a specific ethnic/racial group (e.g., Baty), and in contrast to tools made available online, CREdIT aims to reach women who are less well-educated, Spanish speakers, and those without access to the Internet. Only 10% of San Francisco General Hospital (SFGH) breast clinic patients have internet access, and only a handful of those women actually used the internet regularly. (Unpublished research, Bahtia V. 2007). Furthermore, CREdIT is informed not only by educational theory, but also by clinical experience in a unique program that provides free genetic counseling and BRCA testing to medically underserved women in a public hospital (Lee et al.
2005; Lubitz et al.
2007). With funding from the Avon Foundation in 2002, the UCSF Cancer Risk Program pioneered a program to offer free genetic counseling and testing to low income and uninsured families at San Francisco General Hospital (SFGH), a county “safety net” hospital that provides care to all residents of San Francisco County, regardless of ability to pay. Similar to many U.S. “safety-net” hospitals, SFGH is publicly owned and operated and serves a population that is approximately 50% uninsured at the time of presentation for care. Patients at SFGH are more likely to be from racial and ethnic minorities than the San Francisco population, less likely to speak English, and more than half have inadequate or marginal health literacy (Schillinger et al.
2002). The majority of safety-net institutions nationwide do not provide access to cancer genetic counseling and testing; at SFGH not only are these services provided for SF residents, but follow-up services for screening and preventive procedures are covered, as well as testing for SF Bay Area family members of women who test positive. Since 2002, 625 women have participated in genetic counseling at SFGH, and 156 women have been BRCA tested.
Formative research conducted for the design of CREdIT utilized focus groups to assess women’s preferences for “conventional” versus “colloquial” presentation of risk information (Lubitz et al.
2007). The “conventional” version utilized pictures of genes, pedigrees, and quantitative representations of risk while the “colloquial” version used an analogy of the “information book” of genes, family stories and vignettes, and visual representations of risk, without scientific words. Based on the results of the Lubitz study, CREdIT was revised by an interdisciplinary team (genetic counselor, oncologist, primary care physician, epidemiologist and anthropologist) to incorporate Lubitz’s findings that “simplicity, analogies and familiarity support comprehension, while vignettes, family stories and photos of real people provide comfort and hope” (p.276). The resulting educational tool reported herein is structured around a first-person, narrative vignette delivered via a 16-min (non-interactive) computer-based slide presentation. It is designed to provide basic education about: 1) familial cancer and genetic counseling; 2) genes, inheritance, and probabilities for inheriting cancer; and 3) risk management and risk reduction options. These three topics coincide with three parts in the narrative (see Appendix), beginning with “Theresa’s Story,” narrated by Theresa herself, a woman who has a strong family history of early onset breast cancer. It utilizes a family tree with pictures of family members rather than kinship symbols to talk about the family and to show “how cancer can be passed down in families.” Part 2, “Why My Family is Different,” explains genes and genetic mutations using the analogy of an instruction book, and illustrates risk probabilities visually. In Part 3, “How Can I Reduce My Cancer Risk?” Theresa explains in a conversational manner what the genetic counselor told her about how she can reduce her cancer risk, and she provides information on risk management options. The tool aims to appeal to low literacy populations by using jargon-free language, non-scientific images, and the instruction book analogy to discuss genetics.
Purpose of the Study
The purpose of this study was to qualitatively evaluate participants’ experience with and perceptions of a genetic education program provided as an adjunct to genetic counseling. We conducted a pilot test of an intervention to show CREdIT to patients immediately prior to their initial genetic counseling appointment at SFGH. Our evaluation of the pilot intervention included direct observations of a subset of participants viewing CREdIT and their genetic counseling sessions, in-person qualitative semi-structured interviews with a sub-set of observation participants, and a Genetic Counselor post-counseling session questionnaire. Our major research questions were: (1) How do women respond to this genetic education program administered prior to an initial genetic counseling session? (2) How does CREdIT affect genetic counselors’ satisfaction with their sessions, perceptions of patient anxiety and preparedness, and counseling time? (3) What changes and improvements are needed to make CREdIT accessible and culturally appropriate to this public hospital population?
Methods
Population and Setting
Table
1 shows the overall population in the Cancer Risk Program (CRP) as well as the self-reported race/ethnicity of pilot study participants (
N = 52), and a subset of these who comprise our interview participants (
N = 11). The interview participants are the focus of this report. The anthropologist (first author) observed 17 of the 52 CREdIT sessions in order to recruit 11 women for interviews; 6 participants declined or were unable to participate in an interview. While the interview sample is small (
N = 11), as is common in qualitative research, the sample, in terms of immigrant status, ethnicity and education was heterogeneous. Compared to the SFGH Cancer Risk Program population overall, our interview sample were all English speakers (100% versus 77%) and thus a smaller percentage were Latina (9% versus 26%) and Asian (9% versus 13%).
Table 1
Self-Identified Race and Ethnicity of SFGH Cancer Risk Program Population and Interview Participants
African American | 90 (12%) | 8 (15%) | 2 (18%) |
Latino | 195 (26%) | 16 (31%) | 1 (9%) |
Asian/Pacific Islander | 98 (13%) | 5 (10%) | 1 (9%) |
White | 360 (48%) | 20 (38%) | 5 (45%) |
Mixed Race | Unknown | 2 (4%) | 2 (18%)a
|
Table
2 shows the age, race/ethnicity, education and breast cancer status of the 11 interview participants.
Table 2
Interview Participant Characteristics
01 | 30 | White (Bosnia-Herzegovina) | Masters degree | No |
02 | 34 | White | HSa degree | No |
03 | 62 | Latina (El Salvador) | HS degree | No |
04 | 42 | Latina/White | <HS | No |
05 | 52 | Filipina (Philippines) | HS degree | DCISb
|
06 | 54 | African American | HS degree | No |
07 | 65 | White | HS degree | No |
08 | 23 | African American/White | HS degree | No |
09 | 41 | White | College Degree | DCISb
|
10 | 63 | White | College Degree | No |
11 | 61 | African American | College Degree | No |
All women who were interviewed had one or more first-degree relatives with cancer, and 2 had a personal history of breast cancer [ductal carcinoma in situ (DCIS) in both cases]. The baseline family history risk of participants in this study was comparable to that of SFGH CRP patients overall. Among the 11 interview participants, the mean age was 49 (Range: 23–65). Seven had a high school education or less, and three were foreign born (Philippines, El Salvador and Bosnia-Herzegovina). Self-reported race and ethnicity included: 5 Whites; 2 African Americans; 1 Filipina; 1 Latina; and 2 mixed race (African American/White and Latina/White). All were uninsured or on Medicaid, and 45% were unemployed; thus in terms of socio-economic status, our participants reflected the SFGH population overall and the SFGH CRP program participants.
Recruitment
Approximately half of all the patients seen in the SFGH Cancer Risk Program (CRP) are referred by a clinician in SFGH affiliated practices including breast oncology, GYN oncology, surgery, and primary care. The other half are referred based on a single-page family cancer history questionnaire (available in four languages: English, Spanish, Chinese, Russian) administered to women waiting for screening mammograms at SFGH. A genetic counselor systematically classifies the questionnaires collected each week to identify women who may be at high risk [see Lee et al. (
2005) for criteria used], and uses a faxback form to contact primary care physicians of women with high heritable cancer risk for referral to SFGH. These patients are then called by a Genetic Counseling Assistant (GCA), who confirms family history documented in the referral or mammography screening questionnaire, and then invites the patient for a free genetic counseling appointment if counseling is appropriate. Two GCAs (who were involved consecutively in this study) recruited participants in the course of their usual calls to patients to offer appointments.
Data Collection Procedures
We followed well-described data collection procedures for direct observations and semi-structured interviews (Berg
1995; Emerson et al.
1995; Fetterman
1998). The GCA who scheduled the genetic counseling/CREdIT appointment showed CREdIT to the participant on a laptop computer. She scrolled through the slide presentation manually in a private room at the clinic, and was available to answer questions.
The GCA and/or the first author then accompanied the participant to see the genetic counselor in another location on the hospital campus. Thus, each participant received an individual one-on-one appointment with a genetic counselor immediately after viewing CREdIT. The structure and content of the genetic counseling sessions with participants and non-participants was similar to regular non-CREDIT counseling sessions. Specifically, the counselors took a detailed four-generation pedigree, and then discussed individual hereditary risk, the value or lack thereof of BRCA testing given the patient’s individual family history, and appropriate cancer screening for the participant and her family members. Differences in the content of the sessions were primarily associated with counselors’ acknowledgement of and references to content provided in CREdIT; that is they used CREdIT to develop rapport (e.g., by asking “Did you see your family in CREdIT?”), and by referring to it when discussing hereditary risk and screening options—to reinforce what patient’s heard in CREdIT (e.g., referring to a character in the program or to an image illustrating risk visually.)
The first author observed as CREdIT was presented to each participant in a private room at the SFGH mammography center, and then observed the genetic counseling session. Observations were systematically recorded in field notes, and included patient-GCA interactions, patient questions during and after watching CREdIT, and topics covered during counseling.
The first author conducted all of the semi-structured interviews in a conference room at the hospital within 2 weeks of viewing CREdIT/seeing the genetic counselor. The purpose of the interviews was to assess the experience of viewing CREdIT and meanings of this genetic education program in the context of genetic counseling. A standard set of interview questions was utilized in all interviews to cover the following topics: personal and health background; genetic counseling referral process; content and format of CREdIT; observed reactions to CREdIT (e.g., if participant had asked questions or responded in other ways while watching); and the genetic counseling session following CREdIT. Additional questions were added based on participant responses to the standard questions and the observations of the participant viewing CREdIT and in Genetic Counseling. Interviews lasted 30–75 min (Mdn = 51) and were digitally recorded and transcribed by a professional transcriptionist.
Two genetic counselors filled out brief questionnaires regarding their perceptions of the genetic counseling session for 52 sessions in the CREdIT pilot study as well as for 24 sessions that were not part of the CREDIT study. These questionnaires assessed appointment duration, genetic counselor satisfaction, perception of patient’s anxiety, and perception of patient’s preparedness for the session (See Table
3).
Table 3
Genetic Counselors’ Mean Responses to Post-Counseling Questionnaire
Appointment Duration (minutes) | 42.2 | 17.9 | 35.0 | 8.8 | 0.19 |
Genetic Counselor’s satisfactiona
| 4.6 | 1.3 | 4.9 | 1.5 | 0.40 |
Patient’s anxietyb
| 4.4 | 1.6 | 4.4 | 1.5 | 0.79 |
Patient’s preparednessc
| 3.8 | 1.6 | 5.1 | .9 | < 0.0001 |
Data Analysis
We created a qualitative database using Atlas-ti software to facilitate searching, coding, and analysis of the interview transcripts and observation fieldnotes (Weitzman
1999; Weitzman and Miles
1995). We coded data according to substantive content to identify the key themes presented here (Berg
1995; Strauss
1987). The first author conducted data analysis, including writing memos that highlighted preliminary findings and examples that emerged during the coding process. Other authors commented on these memos, shaping successive iterations of coding and analysis. The genetic counselors’ questionnaire responses were tallied and the session durations were calculated from genetic counselor reports of start and end time of each session. Means, standard deviations, and alpha values were used to describe and compare quantitative data from the genetic counselor questionnaires. Genetic counselors were aware of which patients viewed CREdIT when they filled out each genetic counselor questionnaire.
The University of California San Francisco (UCSF) Committee on Human Research approved the research protocol. We obtained verbal informed consent for observations and written consent for interviews. All 52 pilot study participants were compensated $20 in cash for their participation in the viewing of CREdIT, and interview participants received an additional $25 gift card.
Discussion
As clinical genetics becomes more widespread and reaches underserved populations in greater numbers, it is vital that information and education about genetic counseling, testing and hereditary risk is delivered in an appropriate manner. Gaps in the effectiveness of communication have been widely recognized as a major element in health disparities (Thomas et al.
2004), and the lack of appropriate genetic education materials for underserved individuals may contribute to the documented disparities in who uses cancer genetic counseling/testing services (Armstrong et al.
2005; Halbert et al.
2005; Hall and Olopade
2006; Honda
2003; Peters et al.
2004; Singer et al.
2004; Vadaparampil et al.
2006; Zimmerman et al.
2006;) and why (Charles et al.
2006; Hughes et al.
2003; Ramirez et al.
2006).
Understanding the contribution of genetics to cancer risk, the mechanisms of inheritance and the implications of genetic test results can be challenging for anyone; for those who are of lower literacy or education, it can be even more daunting. Given the documented lack of awareness and knowledge about cancer genetics services among medically underserved women (Armstrong et al.
2005; Halbert et al.
2005; Hall and Olopade
2006; Honda
2003; Peters et al.
2004; Zimmerman et al.
2006), the development and evaluation of educational tools such as CREdIT are critical. The CREdIT presentation is a novel program that fills a gap in educational tools for hereditary cancer by tailoring the delivery of pre-counseling genetic education to patients of lower literacy. Furthermore, CREdIT aims to reach this audience by depicting a multi-racial Latino family using the format of a first person narrative vignette, and it is available in English and Spanish. It is informed not only by educational theory, but also by clinical experience in a unique program that provides free genetic counseling and testing to diverse low-income/underserved women in a public hospital.
It must be noted that CREdIT is an educational program, not a decision aid; thus, it differs from other programs not only in its language and style of presentation, but also in its goal. It was designed to orient patients prior to their first genetic counseling appointment, and to provide a platform from which the viewer can engage in discussion with a genetic counselor about individual family history, individual and familial cancer risk, and pros and cons of genetic testing. It provides basic information about familial cancer and genetic counseling: genes, inheritance, probabilities for inheriting cancer, and risk management and risk reduction options. Genetic testing is mentioned, but the benefits and limitations of testing are not discussed and explored. Furthermore, because CREdIT is aimed at an audience that may have little or no prior knowledge of genetics or hereditary cancer, it provides very basic information, with the idea that one on one counseling will provide personalized information for decision-making about genetic testing for HBOC.
Several authors have discussed whether educational tools and decision aids can be used independently or only as an adjunct to counseling (Cull et al.
1998; McGee and Malik
1999; Rubinstein
1999). Given the growth of genetic counseling and testing, educational and decision making tools have been examined for ways to economize the time of counselors and other clinicians. Yet Cull et al. (
1998) for example, concluded that “Observations of misunderstandings and distress emphasize the video should be seen as an aid to, not a substitute, for communications at the clinic” (p. 830). Green et al. (
2004) in a randomized controlled trial assessed the differential impact of using an educational program independently or as an adjunct to counseling, and found that their computer program “had the potential to stand alone… for low-risk women, but should be used as a supplement to genetic counseling for those at high risk” (p. 442). It should be noted however, that the program evaluated by Green et al. had a decision-making component. In the future, it will be important to determine whether CREdIT could be used as a stand-alone tool or only as an adjunct to genetic counseling as originally conceived.
A related question raised by our pilot study is: what is the best setting for the viewing of an educational program like CREdIT—at home, in a high-risk clinic, in a mammography clinic, in a group, with family, individually? Interview participants were generally satisfied with the setting in which they viewed CREdIT. In particular they liked having a GCA on hand, and it is unknown whether CREdIT would be equally satisfying and effective without the GCA. Clearly, the procedures used in our pilot study (individual viewing in a private room accompanied by a GCA) were labor, time and space intensive, and they are not likely to be replicated in other clinic environments, and non-research routines. In a survey of genetic counselors, Axilbund et al. (
2005) found that “Of the 70% who do not use videos, predominant barriers included the perceived lack of an appropriate video, lack of space and/or equipment, and concern that videos are impersonal” (p. 235). While the CREdIT pilot test reflected a “realist approach” for the clinical context where it was developed, with technical upgrades, it could be made appropriate for other clinical settings. For example, CREdIT could be shown without an assistant, and in a group setting (e.g., a waiting room), privately immediately prior to an appointment or on DVD at home prior to an appointment. These alternatives should be explored in future research.
One of the concerns with using educational aids on their own is that they may contribute to inaccurate risk perception. Other studies have found that accurate risk perception is more often achieved with genetic counseling than with a computer program. For example, Green et al. (
2004) found that “genetic counseling was more effective than the computer at reducing women’s anxiety and facilitating more accurate risk perceptions” (p.442). Another study found that an information aid “substantially reduced the mean risk estimate of low- and moderate-risk groups to a more appropriate level; however, there were still women who greatly overestimated or underestimated their risk of developing breast cancer” (Warner et al.
2003, p.59). Given the range of responses to CREdIT, in terms of risk perception—increased risk perception, decreased risk perception, or change in understanding of underlying reasons for risk—further study of risk perception in relation to this genetic education tool is needed.
Participants responded enthusiastically and positively to CREdIT in general, but several participants also offered suggestions for improving it, including (1) provision of additional information about the treatments “Theresa” and her family members with cancer underwent and about preventive care options for those who test BRCA positive; (2) specific information about Theresa’s outcome and a more positive or “success” story to compare with Theresa’s extreme family history; and (3) ethnic tailoring to enable closer identification with the characters in the story. Some of these changes are being incorporated into the program, and will be evaluated as further pilot testing is implemented. By depicting a multiracial Latino family, the program aims to appeal to an ethnically and racially diverse audience. Based on our findings and on the literature (e.g., Hughes et al.
2003; Baty et al.
2003) we suspect that further cultural tailoring will improve our ability to provide effective genetic education to subpopulations. For example, Hughes et al. (
2003) found that cultural beliefs and values may influence genetic test acceptance by African American women, and that therefore integrating such beliefs and values into genetic counseling and education may be appropriate. In collaboration with two other public hospital cancer risk programs that primarily serve African Americans, we are currently conducting research to inform the cultural adaptation of CREdIT for African Americans. In addition, while CREdIT has been translated to Spanish, no adaptations or enhancements have been made for the Latino cultural context. We are planning to tailor CREdIT for Latinos as well.
Study Limitations and Additional Research Recommendations
Limitations of this study include the inability to generalize from our findings to other genetic tests, larger populations, or other locations, due to the small sample size typical of our qualitative study design. However, certain elements of CREdIT could be adapted for educational materials for other genetic tests, for example, the analogy of genes to an instruction book, the first-person vignette format, and the family pictures in the family tree. Our qualitative research has shown that these elements helped participants to engage with and understand basic genetic concepts.
The study design also did not include gathering baseline data to describe the experiences of women in the Cancer Risk Program Population who do not elect CREdIT. Future research should include a comparison to patients who do not use CREdIT, and the protocol should ensure inclusion of more non-English speakers, and more participants with less education. Due to the fact that participants were interviewed after viewing CREdIT and meeting with the genetic counselor, the qualitative evaluation was not designed to determine the effects of CREdIT alone. This design choice was made to evaluate CREdIT as an adjunct to counseling, and to ascertain how the two procedures work together. While this method precludes isolation of the independent effects of CREdIT and counseling, it does reflect a “realist approach” that evaluates CREdIT as it was intended to be used in practice (Pawson et al.
2005).
Although patients who viewed CREdIT were rated as having significantly higher “preparedness” than patients who did not view CREdIT, there were only 2 genetic counselors, and they were aware of which patients had viewed CREdIT. In practice, it was difficult to blind genetic counselors, as patients often brought up parts of CREdIT in the counseling session. Nevertheless, we feel that the highly significant alpha value for this comparison (p≤.0001) reflects an increase in “preparedness” in patients who view CREdIT before their genetic counseling sessions. Future research should examine patient-rated measurements of “preparedness” and also examine CREdIT compared to other educational tools to determine whether this difference in preparedness can be replicated.
Another limitation is that the pilot test procedures are unlikely to be replicated in other clinical settings, particularly non-research settings. Further research is needed to test alternate implementation scenarios for CREdIT that would be less labor, time, and space intensive. If part of the goal is to save time in a busy practice, how can CREdIT be integrated into usual practice in a streamlined way that does not add a burden to counselors and the clinic overall? Future research should address that question, as well as evaluate whether and how CREdIT can help to address particular problems faced by clinics serving underserved patients. For example, another public hospital high-risk clinic is planning to evaluate whether CREdIT can be employed to reduce the no-show rate for counseling and testing appointments. Other research might evaluate what might be added or removed from the CREdIT program to make it more of a “stand-alone” for use with certain categories of women (e.g., lower risk women referred for counseling; women obtaining a screening mammography, etc.). However, we do not foresee using CREdIT as a decision-making tool, but rather to support the genetic counseling process. Finally, given the diversity of participants within our small sample in terms of race/ethnicity, education and personal/family experiences with cancer, we cannot perform subgroup analyses to compare responses to CREdIT between subgroups.
Conclusions
Our findings suggest that CREdIT was a welcome adjunct to individualized genetic counseling for both patient participants and genetic counselors involved in the pilot study. The CREdIT program has potential to improve patient understanding of HBOC, and to prepare underserved women with no prior knowledge of genetic counseling/testing for their initial genetic counseling appointment. Given the evidence that mastectomy and oophorectomy following a positive BRCA test can reduce cancer risk (Kauff et al.
2002; Meijers-Heijboer et al.
2001; Rebbeck et al.
2002), and that BRCA test outcomes have been shown to influence treatment decisions (Morgan et al.
2009), it is critical that all women at high risk of Hereditary Breast/Ovarian Cancer (HBOC) have access to appropriate genetic counseling and testing services—including education—that enable them to make informed decisions. The public health benefits of predictive genetic testing will not be fully realized unless disparities in knowledge and utilization of genetic risk services are addressed (Ponce et al.
2007).
While elimination of financial and other physical access barriers is essential, this is not sufficient to ensure equitable use of risk services. Similar to free mammography, hereditary cancer education, counseling, and testing services must be delivered in appropriate and acceptable ways. For both public health and ethical reasons, it is imperative that we minimize the expansion of cancer disparities as new forms of medicine and medical technologies are implemented in clinical settings. Genetic education tools are a critical component of clinical practices that will make genetic counseling and testing accessible and appropriately deliverable to underserved populations.