Investigating Patient Interactions with an Automated Conversational Agent Delivering Pre-test Genetics Education: A Descriptive Study (Preprint)

2021 ◽  
Author(s):  
Daniel Chavez-Yenter ◽  
Kadyn E. Kimball ◽  
Wendy Kohlmann ◽  
Rachelle Lorenz Chambers ◽  
Richard Bradshaw ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Information Seeking ◽  
Information Needs ◽  
Conversational Agent ◽  
Genetics Education ◽  
Conversational Agents ◽  
Cancer Genetic ◽  
Mental Health Patient ◽  
Additional Support

BACKGROUND Cancer genetic testing has grown exponentially in the past decade in its use for quantifying hereditary cancer risk, while also its use for targeting treatment and care. With this continued growth and shortage of healthcare workforces, there is a need for automated strategies that provide high quality genetics services to patients in order to reduce clinical demand on genetics providers. Conversational agents have shown promise in managing mental health, patient pain management, and chronic conditions and are increasingly being used in cancer genetic services. However, research on how these agents are utilized by patients is limited. OBJECTIVE Therefore, our current study aim was to assess users’ interactions with a conversational agent for pre-test genetics education prior to genetic testing. METHODS The conversational agent provided scripted content similar to what is delivered in a pre-test genetic counseling visit for cancer genetic testing. Outside of a core set of information delivered to all patients, users were able to navigate within the chat to request additional content in areas of interest. An AI preprogrammed library was also established to allow users to ask open-ended questions of the conversational agent. Descriptives statistics were used for quantitative measures and thematic analysis was used for qualitative responses. RESULTS Of 93 National Comprehensive Cancer Network guidelines eligible patients offered access to the conversational agent, 36 started the chat (38.7%), with 30 completed the chat (32.3%). Once a participant completed a chat, a transcript of the interaction was developed for the research team, from which we extracted the following data and compiled results. The majority of users who completed the chat indicated that they wanted to continue with genetic testing (70%, n=21); 30% were unsure (n=9) and no patients declined moving forward with testing. Those who decided to test spent an average of 10 minutes on the chat (SD=2.57), selected an average of 1.2 additional pieces of information, and generally did not ask open-ended questions. Those who were unsure spent 4.0 more minutes on average (mean=14.1, SD=7.41, P=.03) with the chat, selected an average of 2.9 additional pieces of information, and asked at least 1 open-ended question. CONCLUSIONS Our results indicate that the chat met the information needs of the majority of patients considering cancer genetic testing. However, a subset of patients may need additional education or interpersonal support prior to making a testing decision. Such high-information seeking patients may need additional support from a clinical provider to make a testing decision. Genetic counseling team members should follow up with patients who have additional questions and concerns to alleviate any remaining concerns. Therefore, conversational agents have the potential to be a scalable alternative for pre-test genetics education, reducing clinical demand on genetics providers.

Psychosocial Issues in Genetic Testing for Breast/Ovarian Cancer

2021 ◽  
pp. 95-101
Author(s):  
Mary Jane Esplen ◽  
Jonathan Hunter ◽  
Eveline M. A. Bleiker
Keyword(s):  
Breast Cancer ◽  
Ovarian Cancer ◽  
Genetic Counseling ◽  
Genetic Testing ◽  
Develop Breast Cancer ◽  
Elevated Risk ◽  
Breast Cancers ◽  
Cancer Genetic ◽  
Social Challenges ◽  
Mutation Carriers

Approximately 10% of all breast cancers are due to hereditary factors, with the majority caused by mutations in two autosomal dominant breast cancer genes, BRCA1 and BRCA2. Mutations in these genes are associated with cumulative risks of breast cancer of 72% in BRCA1 mutation carriers and 69% in BRCA2 mutation carriers by age 80. Mutation carriers who develop breast cancer have elevated risk for contralateral breast cancer. BRCA1/2 mutations also place women at elevated risk for ovarian cancer. Genetic counseling and testing are available to individuals, with or without cancer, to inform health-related decision-making. While genetic knowledge offers opportunities for prevention, including prophylactic risk-reducing surgery, a number of psychological and social challenges have been identified in the BRCA1/2 population. This chapter provides a broad overview of seminal research on the psychosocial impacts of genetic testing in BRCA1/2 with the goal of helping readers better identify, evaluate, and treat psychosocial challenges stemming from the process of genetic testing. Identifiable risk factors for psychosocial distress during the genetic counseling process are summarized. The chapter points toward key psychometric instruments designed to support psychosocial screening in cancer genetic populations. Further, a summary of intervention strategies to support psychosocial adaptation to genetic testing is provided.

The impact of converting to telehealth for cancer genetic counseling and testing during the COVID-19 pandemic.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13612-e13612
Author(s):  
Katherine Crawford ◽  
Ekaterina Koelliker ◽  
Ellie Proussaloglou ◽  
Jessica Laprise ◽  
Jennifer Scalia Wilbur ◽  
...  
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Saliva Sample ◽  
Cancer Genetic Counseling ◽  
Testing Time ◽  
Cancer Genetic ◽  
Blood Draw ◽  
Significant Difference ◽  
The Impact

e13612 Background: The COVID-19 outbreak in March 2020 resulted in the shift to telemedicine for many specialties including cancer genetic counseling (GC). We sought to understand the impact that converting GC services to telehealth (TH) would have on patient acceptance of recommended genetic testing, time to completion of testing, and time to follow-up GC consultation. Methods: Data analyzing GC in-patient vs. TH consultations were collected using both electronic medical record as well as a laboratory’s testing portal. Statistical analysis was performed using R statistical software. The rates of patient agreement to genetic testing and sample success, along with the time to report availability and to GC follow-up visit was compared between traditional in-person visits and TH visits during the COVID-19 pandemic. In-person visits from March -July 2019 were compared with date matched visits from March -July 2020, when all visits had been converted to TH. Patients who received an in-person consultation received a blood draw on the day of their appointment while TH patients were asked to mail a saliva sample back to the testing laboratory. Results: An analysis of a case-matched cohort between 2019 in-person new visits (n = 30) and 2020 TH new visits (n = 48) was performed. There was not a significant difference in rate of consent to suggested testing between in-person (93.3%) and TH (91.2%) (p = 0.29), though a few TH patients who consented failed to submit a sample (% tested = 93.3% vs. 85.4%, p = 0.01). TH patients had a longer time between their initial consult and when the test report was generated with average turn-around time increasing from 14.33 to 33.82 days (p < 0.1). There was no increase in time from initial consultation to follow up GC appointments (70.46 vs. 75.96 days, p = 0.74) for TH and in-person, respectively. Conclusions: Our data shows that during COVID-19, TH allowed patients to access GC with no significant differences in the length of time between initial consultation and follow up appointments. The type of GC received did not greatly influence a patient’s willingness to consent to testing, despite challenges related to the COVID-19 pandemic, indicating that TH services may be an acceptable substitute. However, TH services are not without their limitations as time between the initial appointment and receipt of test results was significantly longer and sample failure rates were higher. We postulate that the delay was due to the time it took to ship the saliva kit, have the patient collect the sample at home, and return the specimen back to the lab rather than the immediate blood draw that occurs during the in-person visit. The higher sample failure rate seen in TH is likely due to the differences between blood and saliva collections. Additional research is needed to fully understand the outcomes observed in this study in order to assist in developing the most effective strategies for cancer genetic TH services.

scholarly journals Exploring Predictors of Genetic Counseling and Testing for Hereditary Breast and Ovarian Cancer: Findings from the 2015 U.S. National Health Interview Survey

2019 ◽  
Vol 9 (2) ◽  
pp. 26 ◽  
Author(s):  
Caitlin G. Allen ◽  
Megan Roberts ◽  
Yue Guan
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
High Risk ◽  
Cancer Risk ◽  
Familial Cancer ◽  
Genetic Services ◽  
Cancer Genetic ◽  
Medium Risk ◽  
Cancer Genetic Services ◽  
Familial Cancer Risk

Despite efforts to increase the availability of clinical genetic testing and counseling for Hereditary Breast and Ovarian (HBOC)-related cancers, these services remain underutilized in clinical settings. There have been few efforts to understand the public’s use of cancer genetic services, particularly for HBOC-related cancers. This analysis is based on data from the 2015 National Health Interview Survey (NHIS), a U.S.-based nationwide probability sample, to better understand the public’s use of HBOC-related clinical cancer genetic services. Bivariate analyses were used to compute percentages and examine the associations of familial cancer risk for three genetic services outcomes (ever had genetic counseling for cancer risk, ever discussed genetic testing for cancer risk with a provider, and ever had genetic testing for cancer risk). Multivariable logistic regression models were used to estimate the association of familial cancer risk and other demographic and health variables with genetic services. Most women (87.67%) in this study were at low risk based on self-reported family history of breast and ovarian cancer, 10.65% were at medium risk, and 1.68% were at high risk. Overall, very small numbers of individuals had ever had genetic counseling (2.78%), discussed genetic testing with their physician (4.55%) or had genetic testing (1.64%). Across all genetic services outcomes, individuals who were at higher familial risk were more likely to have had genetic counseling than those at lower risk (high risk: aOR = 5.869, 95% CI = 2.911–11.835; medium risk: aOR = 4.121, 95% CI = 2.934–5.789), discussed genetic testing (high risk: aOR = 5.133, 95% CI = 2.699–9.764; medium risk: aOR = 3.649, 95% CI = 2.696–4.938), and completed genetic testing (high risk: aOR = 8.531, 95% CI = 3.666–19.851; medium risk aOR = 3.057, 95% CI = 1.835–5.094). Those who perceived themselves as being more likely to develop cancer than the average woman were more likely to engage in genetic counseling (aOR = 1.916, 95% CI = 1.334–2.752), discuss genetic testing (aOR = 3.314, 95% CI = 2.463–4.459) or have had genetic testing (aOR = 1.947, 95% CI = 1.13–3.54). Personal cancer history was also a significant predictor of likelihood to have engaged in genetic services. Our findings highlight: (1) potential under-utilization of cancer genetic services among high risk populations in the U.S. and (2) differences in genetic services use based on individual’s characteristics such as self-reported familial risk, personal history, and beliefs about risk of cancer. These results align with other studies which have noted that awareness and use of genetic services are low in the general population and likely not reaching individuals who could benefit most from screening for inherited cancers. Efforts to promote public awareness of familial cancer risk may lead to better uptake of cancer genetic services.

scholarly journals The first Japanese nationwide multicenter study of BRCA mutation testing in ovarian cancer: CHARacterizing the cross-sectionaL approach to Ovarian cancer geneTic TEsting of BRCA (CHARLOTTE)

2019 ◽  
Vol 29 (6) ◽  
pp. 1043-1049 ◽  
Author(s):  
Takayuki Enomoto ◽  
Daisuke Aoki ◽  
Kana Hattori ◽  
Masahisa Jinushi ◽  
Junzo Kigawa ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Genetic Counseling ◽  
Genetic Testing ◽  
Serous Carcinoma ◽  
High Grade ◽  
Cancer Genetic ◽  
Cross Sectional ◽  
Cancer Data ◽  
Increased Risk ◽  
The Cross

IntroductionBRCA gene mutations are associated with hereditary ovarian cancer. BRCA plays a key role in genome integrity, and mutations result in an increased risk for ovarian cancer. Although various guidelines recommend BRCA testing in patients with ovarian cancer, data on germline BRCA (gBRCA) mutation frequency in ovarian cancer in Japan are scarce.ObjectiveThis study aimed to determine gBRCA1/2 mutations in Japanese patients with ovarian cancer, stratified by clinicopathological characteristics, and to assess patients’ satisfaction with pre-test genetic counseling.MethodsThe CHARLOTTE study (CHARacterizing the cross-sectionaL approach to Ovarian cancer: geneTic TEsting of BRCA; UMIN000025597) is the first large multicenter epidemiological survey of Japanese women, aged ≥20, with newly diagnosed ovarian cancer (epithelial, primary peritoneal, or fallopian tube cancer), with histologically confirmed specimens. Patients were enrolled sequentially and underwent pre-test genetic counseling for BRCA testing. Blood samples were centrally tested for the presence or absence of known gBRCA mutations. A questionnaire was used to assess patient satisfaction with pre-test genetic counseling.ResultsA total of 634 patients with a mean age of 56.9 years were included. Most patients (84.2%) had epithelial ovarian cancer, and 51.1% had FIGO stage III–IV cancer. Nearly all patients (99.5%) received genetic counseling before the BRCA testing, either by an obstetrician-gynecologist (42.0%) or a clinical geneticist (42.0%). The overall prevalence of gBRCA1/2 mutations was 14.7% (93/634), with gBRCA1 mutations (9.9%) more common than gBRCA2 mutations (4.7%). High-grade serous carcinoma showed a prevalence of gBRCA mutations of 28.5%. Most patients were satisfied with pre-test counseling, irrespective of the service provider’s professional position.DiscussionPatients with high-grade serous carcinoma and family history of ovarian cancer had a slightly higher prevalence of gBRCA mutations, but none of the subgroups had considerably high gBRCA mutation prevalence. These data suggest that gBRCA testing should be carried out in all patients with ovarian cancer.

scholarly journals A randomized trial of a breast/ovarian cancer genetic testing decision aid used as a communication aid during genetic counseling

2008 ◽  
Vol 17 (8) ◽  
pp. 844-854 ◽  
Author(s):  
Claire E. Wakefield ◽  
Bettina Meiser ◽  
Judi Homewood ◽  
Alan Taylor ◽  
Margaret Gleeson ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Genetic Counseling ◽  
Genetic Testing ◽  
Randomized Trial ◽  
Decision Aid ◽  
Cancer Genetic ◽  
Communication Aid
Sign in / Sign up

Export Citation Format

Share Document