MS, University of Cincinnati, 2012, Medicine: Genetic Counseling

BACKGROUND: Communicating positive test results to at-risk family members can be difficult for individuals with BRCA mutations. Previous studies have identified barriers to disclosure but have not addressed the utility of supportive materials in the disclosure process. PURPOSE: The purpose of this study was to identify tools and strategies useful to patients with BRCA mutations in disclosing result information to family members. METHODS: A questionnaire was mailed to 482 patients with BRCA mutations assessing their experience with disclosing test result information to their families. RESULTS: Of the 177 completed questionnaires received, 90 participants reported that they told every at-risk biological relative about their BRCA positive test results. These 90 questionnaires were analyzed to assess the utility of specific tools and strategies provided by genetic counselors to assist patients with results disclosure. Participants felt that printed materials, such as a sample letter explaining that a BRCA mutation had been identified in the family was the tool expected to be most helpful in disclosing result information. The strategy expected to be most helpful in disclosing BRCA positive test result information was a step by step plan for informing family members. Eighty-seven participants, those who reported they did not tell one or more family members their results, reported reasons for non-disclosure including those that may be considered to be valid reasons, such as at-risk relatives who were under the age of 18 at the time the results were in active discussion, some family members did not wish to be informed of results, and relatives who previously received results by someone other than the participant. CONCLUSIONS: Results from this study suggest that patients perceive a benefit from receiving a sample letter to distribute, as well as a clear plan to effectively communicate positive results to family members. It is recommended that both be provided by genetic (open full item for complete abstract)

Committee: Robert Hopkin MD (Committee Chair); Erin Acra Mundt MS (Committee Member); Valentina Pilipenko PhD (Committee Member) Subjects: Genetics

Master of Science, The Ohio State University, 2024, Genetic Counseling

Cascade testing for Hereditary Breast and Ovarian Cancer syndrome (HBOC) is central to identifying family members at heightened risk for cancer. Despite the well-documented importance of cascade testing, such as the United States Centers for Disease Control and Prevention and Office of Public Health Genomics naming HBOC a Tier 1 Genomics Application, current data suggest that the uptake of cascade testing remains suboptimal (Fehniger et al., 2013; Menko et al., 2019). There are many cited barriers to family discussion of HBOC and cascade testing, and research suggests that healthcare providers can alleviate certain barriers by providing informational resources to facilitate patient-mediated communication (Chivers Seymour et al., 2010; Srinivasan et al., 2020, Frey et al., 2022). In this survey-based study, 103 individuals with a likely pathogenic or pathogenic variant in BRCA1 or BRCA2 were recruited. We assessed the reactions to and impact of a 2-minute animated video (BRCAShare), in conjunction with a family communication guide, on the intrafamilial sharing of genetic test results. The BRCAShare video, guided by the Health Belief Model (HBM), depicts a hypothetical scenario of a relative's recent diagnosis of HBOC. Surveys assessed three domains from enrollment to post-study: 1) participants' intent to share; 2) perceived susceptibility, seriousness, benefits, or barriers to intrafamilial sharing of results and cascade testing; 3) the impact of family dynamic on sharing. All participants received the electronic family communication guide, while only one randomized group received the BRCAShare video in addition to the communication guide. Those who viewed the video had significantly higher odds of reporting intent to share compared to those who did not, suggesting that a video message is an effective method for increasing family communication about HBOC and cascade testing (p<0.05). Results also suggest that participants who viewed the video perceived sharing to be (open full item for complete abstract)

Committee: Leigha Senter-Jamieson (Advisor); Alexandra Spencer (Committee Member); Amber Aeilts (Committee Member) Subjects: Genetics; Oncology

Doctor of Philosophy, The Ohio State University, 2020, Communication

Past research has found that generally having a discussion with other people about a health message after exposure can help increase the effectiveness of the message. While certain factors, such as conversational valence and the relationship between conversational partners, can impact the effectiveness of such a conversation, there is little research into the causal mechanisms that drive the impact of a discussion on attitudinal outcomes. To investigate the potential mechanisms of how a discussion of a health message can lead to more positive outcomes than there being no discussion, this dissertation turns to the elaboration likelihood model (Petty & Cacioppo, 1986) and self-validation theory (Petty et al., 2002). These theories suggest that discussion of a health message leads to more elaboration about the message. This higher level of elaboration leads to more thought confidence which results in more positive attitudes towards the health topic. Additionally, it is theorized that interpersonal discussion of a health message leads to more perceived validation of thoughts which has also been shown to positively influence though confidence. Dissertation hypotheses were tested within the context of a narrative about BRCA mutation testing for women in their 20s. To test whether elaboration was higher in interpersonal discussions than in other situations, this dissertation asked participants to either to discuss a health message, to think carefully and write about the message, or were not directly asked to elaborate on the health message. Additionally, those who were asked to discuss the health message were given exclusively positive feedback by a confederate (whom participants thought was another participant in the study). Results indicate that those who had a discussion did not engage in more elaboration than those who were asked to write about the message or were not given any elaboration instructions, nor was condition related to differences in perceived validation. (open full item for complete abstract)

Committee: Shelly Hovick PhD (Advisor); Emily Moyer-Guse PhD (Advisor); Jesse Fox PhD (Committee Member) Subjects: Communication

Master of Science, The Ohio State University, 2019, Genetic Counseling

Transgender individuals face significant healthcare disparities due to discrimination, which include reluctance to disclose, lack of provider experience and resources, structural barriers, and financial barriers. No consensus guidelines have been developed for breast cancer risk assessment and screening in transgender male patients. Breast health can be a difficult topic for transgender men, as it brings them into female centered spaces and can lead to experiences of gender dysphoria. This research aims to elucidate barriers to breast cancer screening and genetic risk evaluation for transmasculine individuals. Research questions aimed to determine what the level of awareness transgender men have about breast cancer risk and screening, and the factors that lead to positive or distressing conversations about breast health with these patients. We aim to determine how healthcare providers can foster a safe and affirming environment that increases comfort and reduces perceptions of discrimination and gender related dysphoria with a focus on genetic counseling for hereditary breast cancer risk assessment. Recommendations are made for improving the clinical experiences of these individuals including using mirroring an individual's terminology for their anatomy, providing gender affirming patient resources, addressing the gendered cultural discussion around breast cancer, using correct name and pronouns, and acknowledging the topic as potentially difficult.

Committee: Robert Pilarski MS, MSW, LGC (Advisor); Leigha Senter MS, LGC (Committee Member); Kandamurugu Manickam MD (Committee Member); Melissa Davis MD (Other) Subjects: Gender; Gender Studies; Genetics; Glbt Studies; Health; Health Care; Medicine

Master of Science, The Ohio State University, 2019, Genetic Counseling

Although the clinical importance of cascade testing in families with hereditary cancer syndromes is well documented, complicated discussions can arise when genetic information is shared and subsequent discussions among relatives are often complicated. Novel communication aids should be considered to assist aid in these conversations. To investigate one possible method, we evaluated the theoretical impact of receiving unsolicited information about genetic testing performed in one's family through a video that could be shared via text or social media. Participants (N=399) viewed a video describing a relative's recent BRCA+ diagnosis and the potential impact on themselves. They also completed a survey with questions regarding thoughts on the message, hypothetical willingness to act on results, and other measured variables. The electronic survey instrument was built using the Health Belief Model, which postulates that an individual is more likely to engage in a behavior if they perceive greater risk in their severity and susceptibility, greater benefits than barriers to engagement in the behavior, self-efficacy, and a cue to action. This framework was used to measure participants' willingness to undergo genetic testing, seek out a genetic counselor, discuss genetic testing with their doctor, and talk to family members about their family history of cancer. Characteristics shown to impact intent to take action in these categories included intolerance of uncertainty, having a close family history of cancer, and greater family dynamics (ps < .05). A majority of participants (75.95%, N=300) would undergo genetic testing if it cost $100 or less. Additionally, a majority of participants (70%, N=281) were willing to meet with a healthcare professional to discuss genetic testing. Understanding potential reactions to receiving unsolicited genetic information is the first step in investigating novel communication aids in cascade testing.

Committee: Leigha Senter-Jamieson MS, LGC (Advisor); Kristen Carpenter PhD (Committee Member); Lindsey Byrne MS, LGC (Committee Member) Subjects: Genetics

MS, University of Cincinnati, 2017, Medicine: Genetic Counseling

Genetic testing for inherited cancer risk has recently improved through the advent of multi-gene panels and the addition of deletion and duplication analysis of the BRCA genes. The primary aim of this study was to determine which factors influence the intent of individuals with a personal history of breast and/or ovarian cancer and negative or uncertain BRCA1 and BRCA2 testing to return to a hereditary cancer program for additional genetic risk assessment, counseling, and testing. Surveys were sent to 1,197 individuals and 257 were returned. Of those participants who were planning to return to clinic, most cited having family members who could benefit from the test result as the primary motivation to return. Many participants who were not planning to return to clinic cited the cost of testing as a barrier to return. Cost of testing and concerns about insurance coverage were the most commonly cited barriers for the group of participants who were undecided about returning to clinic. Results from this study may be used to guide re-contact efforts by clinicians to increase patient uptake to return to clinic for up-to-date genetic risk assessment, counseling, and testing.

Committee: Jaime Lewis M.D. (Committee Chair); Hua He M.S. (Committee Member); Jennifer Hopper M.S. L.G.C. (Committee Member); Sara Rankin Knapke M.S. (Committee Member); Rebecca Sisson M.S. L.G.C. (Committee Member) Subjects: Genetics

Master of Science, The Ohio State University, 2016, Genetic Counseling

Introduction: Hereditary breast and ovarian cancer syndrome (HBOC) is a cancer-predisposition syndrome that affects both men and women, with more significant cancer risk elevations in women. Because there are well-established guidelines for cancer risk reduction and prevention in HBOC, it is critical that health care professionals understand information-sharing patterns among patients to facilitate communication processes and identify at-risk family members. Dissemination of familial genetic risk information in females with HBOC is well defined, but knowledge about how males share this information is limited. The aims of this study include: to describe participants' feelings and opinions about HBOC; to ascertain participants' extent of information sharing with family and medical personnel; and to describe the needs of participants for information and resources provided by genetic counselors and other health care providers. Methods: We interviewed 21 primarily Ashkenazi Jewish men who were accrued through Facing Our Risk of Cancer Empowered (FORCE). Interviews focused on family cancer history, experiences with cancer and genetic testing, motivations to pursue genetic testing and subsequently disclose genetic test results, information sharing patterns, healthcare provider response, and participants' emotional support systems. The interviews were transcribed in their entirety, coded, and analyzed based on grounded theory. Results: Eighteen transcripts were used for the analysis. Results can be classified into 5 main themes. Participants (n=8) were most concerned about cancer risk for their children and female family members, and most (n=11) mentioned HBOC provides them increased personal awareness, but has a negligible impact on their life overall (n=9). Men (n=11) were interested in a male focused support group to discuss HBOC and gain knowledge and information. Participants (n=9) took on active and open communication roles with family members and health care p (open full item for complete abstract)

Committee: Leigha Senter MS, LGC (Advisor); Robert Pilarski MS, LGC (Committee Member); Doreen Agnese MD (Committee Member) Subjects: Gender; Genetics

Master of Science, The Ohio State University, 2016, Genetic Counseling

Women with hereditary breast and ovarian cancer syndrome (HBOC), caused by mutations in BRCA1 or BRCA2, have increased lifetime risks of certain cancers, including breast and ovarian cancers. Lifetime cancer risks are presented to BRCA mutation carriers during genetic counseling, often with the addition of statistical figures and graphs. This study examines how factors such as demographic characteristics, health numeracy, graph literacy, and HBOC knowledge affect BRCA mutation carriers' preferences for and understanding of different cancer risk estimate formats, including line graph, bar graph, icon array, and text-only. An anonymous online survey was completed by 82 BRCA mutation carriers that assessed attitudes, comprehension of, and preferences for the cancer risk estimate formats. Participants best understood lifetime cancer risks when presented using the text-only format, but preferred their lifetime cancer risk be presented graphically. The line graph was the most preferred and most easily understood graphical format for presenting lifetime cancer risks. Increased comprehension of the line graph was associated with higher graph literacy (p<.05), while increased comprehension of the bar graph and icon array were associated with higher health numeracy (p<.05). Results suggest that when presented with lifetime cancer risks in genetic counseling, BRCA mutation carriers may benefit most from text and graphic displays, particularly a line or bar graph, to help describe their risks. Line graphs may be more effective for patients with higher graph literacy, whereas bar graph may be more effective for patients with higher health numeracy.

Committee: Shelly Hovick PhD (Advisor); Leigha Senter-Jamieson MS (Committee Member); Kevin Sweet MS (Committee Member) Subjects: Genetics

MS, University of Cincinnati, 2011, Medicine: Genetic Counseling

Purpose: To describe the impact of the Myriad Genetics direct-to-consumer advertising (DTCA) campaign for BRCA genetic testing on a Hereditary Cancer Program (HCP) in Cincinnati, Ohio. Methods: Patient data was extracted from the HCP Database from two time periods, August 2008-March 2009 (DTCA campaign not in effect) and August 2009-March 2010 (DTCA campaign in effect). Patient demographics, risk assessment, and genetic testing uptake between these time periods were compared for patients referred for BRCA-related genetic services and non-BRCA-related genetic services. Results: Demographics (age, race, religion, education, marital status, and personal cancer diagnosis) did not differ between the time periods for either the BRCA or non-BRCA populations. There was an increased proportion of patients receiving a low risk (<7%) assessment for a BRCA mutation during the DTCA campaign (28%) versus pre-DTCA campaign (17%), a decreased proportion receiving a moderate risk (7-20%) assessment for a BRCA mutation (49% during and 57% pre-DTCA) and no differences in the proportion receiving a high risk (> 20%) assessment for a BRCA mutation. The proportion of individuals declining BRCA testing was higher during the DTCA campaign (20%), compared to the pre-DTCA time period (9%) We did not observe significant differences in mutation based risk-assessment or testing uptake in the non-BRCA related patient population. Conclusion: Patients seen in the HCP during the DTCA campaign for indications related to BRCA testing were at an overall lower risk for carrying a genetic mutation for a hereditary cancer syndrome and were less likely to pursue genetic testing. These results were not seen in the non-BRCA related patient population suggesting they may be a result of the Myriad DTCA campaign. This information may help predict trends in patient populations seen by similar programs in areas targeted by future Myriad DTCA campaigns.

Committee: Melanie Myers PhD (Committee Chair); Erin Acra Mundt MS (Committee Member); Sara Rankin Knapke MS (Committee Member); Lisa Martin PhD (Committee Member) Subjects: Genetics

MS, University of Cincinnati, 2006, Allied Health Sciences : Genetic Counseling

This study explores the impact of the type of genetic risk estimate (qualitative or quantitative) given in hereditary breast cancer counseling on risk perception, intention to test, and satisfaction with the genetic counseling session. These measures were assessed in 91 patients who completed pre- and post-counseling questionnaires. Participants randomly received either a qualitative or quantitative estimate of their chance for carrying a gene mutation. The type of estimate given was compared with each of the outcome measures and analyzed for statistical significance. The type of estimate provided was not significantly associated with any of the outcomes measured in this study. Risk perception became more accurate after genetic counseling, although this perception was more strongly correlated with a participant's pre-counseling risk perception than with the actual risk given during the counseling session. Qualitative and quantitative estimates do not appear to have an impact on risk perception, intention to test, or satisfaction.

Committee: Jessica Everett (Advisor) Subjects: Health Sciences, Oncology

MS, University of Cincinnati, 2004, Allied Health Sciences : Genetic Counseling

This study characterized women's responses to the direct-to-consumer advertising campaign for BRACAnalysisreg; hereditary breast and ovarian cancer susceptibility testing. The study assessed women's intent to pursue testing before and after viewing the commercial and identified where women would seek out information. Pre- and post-test questionnaires assessed family history of breast cancer, breast cancer anxiety and risk perception, as well as the likelihood that women would pursue genetic testing for breast cancer risk. After viewing the advertisement, 73% of women reported interest in information about BRACAnalysis®. Overall, 76% of women reported that they would seek information on BRACAnalysisreg; testing from their OB/GYN and 37% would go to their family doctor. Being that OB/GYNs may soon be faced with an increase in questions about and requests for BRACAnalysisreg; testing, it is imperative that an educational plan be set in place to train OB/GYNs further about the genetics of breast and ovarian cancer.

Committee: Jennifer Gamm (Advisor) Subjects:

Doctor of Philosophy, University of Akron, 2011, Marriage and Family Counseling/Therapy

The purpose of this study was to gain a better understanding of the relationship between couples‟ communication, marital satisfaction, and involvement in a support group for couples where one partner has a genetic mutation that places him/her at a significant risk for developing cancer. Researchers have investigated marital satisfaction in couples with illness, the role of support groups for couples with illness, and communication about illness. Research looking at genetic risk for illness, however, is limited, especially as it relates to couples‟ relationships. Breast cancer is the second most diagnosed cancer in women and ovarian cancer is the fifth most diagnosed cancer in women. About 10% of breast cancers and about 10% of ovarian cancers are related to a deleterious mutation, referred to as BRCA (Breast Cancer), that can be detected through a blood test. There are many decisions facing individuals and families in dealing with this BRCA mutation, and this stress can cause a great deal of strain on the couple relationship. Support groups are available to help wade through the vast amount of information. However, the role of these support groups on relationship satisfaction has not been studied. A correlational research design examined data from 62 couples who were recruited through a support group called FORCE (Facing Our Risk of Cancer Empowered). The couples recruited for the study required that at least one partner be diagnosed with the BRCA mutation. The couples were in a marital or co-habitating relationship. The couples were asked to complete a standardized instrument, the Marital Satisfaction Inventory-Revised, to examine issues impacting their relationship satisfaction. They also completed a demographic questionnaire that included several Likert scale questions regarding support for their BRCA status and involvement in a support group. John Rolland‟s Family Systems-Illness Model (1994) was the lens used in examining the data reported by the participants. (open full item for complete abstract)

Committee: Patricia Parr Dr. (Advisor); John Gabrosek Dr. (Committee Member); Karin Jordan Dr. (Committee Member); Sandra Spickard Prettyman Dr. (Committee Member); Cynthia Reynolds Dr. (Committee Member) Subjects: Counseling Psychology; Therapy