10/15/2018 No Disclosures Precision Genomics and Genetic Counseling with Cancer Patients GALEN JOSEPH, PHD 7TH ASIAN HEALTH SYMPOSIUM, UCSF OCTOBER 11, 2018 Objective Overview To identify the role of communication in precision genomics and genetic counseling to reduce I. Background on Hereditary Cancer, Health Disparities, and Health Literacy hereditary cancer risks. II. Study: Communication in Genetic Counseling III. Cancer Genetic Counseling with Low Income Chinese Immigrants IV. Other interventions to improve communication in genetic counseling/genomics communication 1
10/15/2018 Background However, access alone is not enough Most common hereditary cancer syndromes are Hereditary Breast and Ovarian Cancer Potential to exacerbate existing disparities as (HBOC) and Hereditary nonpolyposis colorectal cancer (HNPCC) or Lynch Syndrome genetics and genomics advances if all populations Limited data on prevalence of HBOC and Lynch syndrome in Asian ancestry populations, but rates appear to be similar to European ancestry populations can’t gain the benefits. Typically 5‐10% of cancers are hereditary Another 15% are “familial” or multifactorial Most are due to other unknown factors/chance. Hereditary cancer services increasingly accessible due to lower costs of genetic testing; coverage under ACA; and broader criteria for testing Genetics/Genomics increasingly part of mainstream medicine—reaching beyond specialty genetics and oncology clinics Population genomic screening, e.g. screening healthy populations for hereditary cancer Direct to consumer genetic testing Gaps in effective communication contribute to Challenges to Effective Communication disparate health outcomes Health literacy is low in US o Only 12 percent of U.S. adults have the health literacy skills needed to manage the demands of our complex health care system o 1/3 have basic or below basic literacy (reading and understanding a prescription label is a challenge) o Low health literacy is associated with poorer health outcomes and poorer use of health care services o Health literacy: o the capacity to obtain, process, understand, and use information for health‐related decision‐making; o includes oral, print, numeracy and cultural/conceptual domains Health Numeracy is low: o Approximately half of the adults in the United States are unable to accurately calculate a tip o 20% of college‐educated adults do not know what is a higher risk—1%, 5%, or 10% Effective Communication = Physicians commonly overestimate patients’ literacy levels both participants share a common understanding 2
10/15/2018 Communication in Genetic Counseling Challenges to Effective Communication Translating Cancer Genetics to the Safety Net Setting (2012‐2017) Limited English proficiency (LEP) o ~20% speak a language other than English at home o Combination of LEP and low literacy may have synergistic effects Research Questions: Differences between culture of biomedicine and the populations it serves How do these communication challenges play out in cancer genetic All contribute to challenges for health communication in general counseling in safety net settings? o Given complexity, especially true for genetics and genomics What can we do to improve the communication? Information Mismatch Methods INFORMATION PATIENTS INFORMATION COUNSELORS PROVIDE: WANT TO KNOW: o Observed/audio recorded GC Sessions (n=170) • What genetics, genes and mutations • Is my cancer hereditary? o English, Spanish and Chinese are • Am I going to get cancer? o 2 public hospitals; 30 months • How they make a risk assessment • What caused my cancer? o Qualitative interviews with patients offered GT (n= 49) • What a genetic test is; how it’s • Are my family members going to get o Stimulated recall performed; what it examines cancer? o Qualitative interviews with Observed Genetic Counselors (n=10) • Possible test results o Medical Interpreters at one site • Limitations of test • If I am likely to get cancer (again), o Interviews (n=11) • Test is optional what can I do, if anything? o Survey (n=18) • Screening and surgical options if you • Is there anything I can do to protect test positive my children/family members? Joseph, G., et al (2017). Information Mismatch: Cancer Risk Counseling with Diverse Underserved Patients Journal of Genetic Counseling , 26 (5), 1105‐1105. 3
10/15/2018 Results: Qualitative Themes 1. Too Much Information 2. Complex Terminology and Conceptually Difficult Presentation of Information 3. Information Perceived as not Relevant by the Patient 4. Counselors Unintentionally Inhibited Patient Engagement and Question‐ Asking 5. Vague Discussions of Screening and Prevention Recommendations Joseph, G., et al (2017). Information Mismatch: Cancer Risk Counseling with Diverse Underserved Patients Journal of Genetic Counseling , 26 (5), 1105‐1105. 1. Strong beliefs in environmental causes of Interviewed after Interviewed after Pre‐test Pre‐test appointment appointment cancer and skepticism about genetic causes only only (n=5) (n=5) Interviewed after Interviewed after Eligible for Eligible for Observed 40 GC Observed 40 GC Agreed to Agreed to Results Results interview because interview because appointments appointments interview interview appointment appointment offered GT offered GT (n=25) (n=25) (n=13) (n=13) only only I think the reason I had breast cancer was not because of my (n=19) (n=19) (n=4) (n=4) genes. I have been working hard for many years, and the fatigue is catching up to me. Also, air pollution and genetically Interviewed after Interviewed after Pre‐test and Pre‐test and modified foods may contribute to breast cancer. […] Results Results Appointments Appointments (n=4) (n=4) 4
10/15/2018 2. Willingness to undergo genetic testing despite I think if my father wasn’t forced to do farm work during the Great Cultural skepticism of hereditary cause of cancer Revolution and he stayed in Guangzhou working a stable job and had the family as a whole together, he might not have gotten cancer. The main reason he had No financial barrier cancer was because he wasn’t happy and was treated unfairly … If a person Test covered by insurance (MediCal or Medicare), or foundation or laboratory support No cost to patient continues to be wrongfully accused of doing something and remains depressed Expected test to be negative all the time, even a healthy person can develop an illness. I think that my father Potential to alleviate concerns about family had cancer because he was under constant accusations. My brother, however, it was because he was a businessman so he had to eat out and drink a lot. He also didn’t get much rest, and the stress from work caused his cancer. He wouldn’t have gotten cancer if he could have retired earlier. I don’t think my family carries the cancer gene. 3. Misunderstanding of key information needed 4. Variable interpreter quality limits to make informed decisions about testing and understanding and reinforces misconceptions screening/prevention options Genetic test as checking for cancer rather than the risk of cancer Remote interpretation issues of trust and technical difficulties BRCA1 and 2 like diabetes type 1 and 2 It would be best if the interpreter could be present in the room instead of over the Risk of recurrence vs. risk of a new primary cancer in a different organ: phone so that I could understand more clearly and ask more questions. I don’t feel as comfortable asking questions over the phone. If the interpreter was actually in the Patient: Right. She recommended that I remove my uterus, but I didn’t want to. room, it would be a lot better. […] I’m afraid to ask questions over the phone. [10‐CHI]. Interviewer: Why do you think she recommended you to remove it? Interpreters’ limited understanding of genetics Patient: Well if I remove it, then [the cancer] wouldn’t go there. I didn’t think it was necessary, since it can go anywhere. If it doesn’t go to the uterus, it will go to the GC: But sometimes there can be what’s called a mutation or a change in the gene so it ovaries and my ovaries are in the same area. I don’t think it’s necessary. doesn’t work properly. [9‐CHI, results] Interpreter: Usually regarding our immune system, after a long time and we get old and things change then these genes…cannot protect. [4‐CHI, pre‐test] 5
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