As demand for genetic services grows, innovative genetic counseling service delivery models (SDMs) are needed. However, there is limited research on the barriers and needs of genetic counselors (GCs) interested in implementing new SDMs into their practice. In fall 2017, the National Society of Genetic Counselors (NSGC) Access and Service Delivery Committee's SDM Subcommittee sent an online survey to the NSGC membership regarding the use of SDMs, which aimed to update the understanding of current SDM use and how this has changed over time. The survey included several questions with open-response components assessing the need for new SDMs and barriers to implementation. Inductive thematic analysis was used to identify common themes. Among 517 usable responses (16% response rate), more than half (54.4%) of respondents indicated their current SDM was inadequate to address the patient need in their area. Nearly two-thirds (64.8%) indicated they were in the process of or planning to make changes to their SDM, although 40.6% did not have a specific timeline. Three major themes related to expanding access, reimbursement for services, and lack of support were identified from responses to questions about implementation of additional SDMs. Access included subthemes of geographic and physical location limitations, addressing long wait times, and the need to expand services. Reimbursement for services included issues with billing, genetic counselor licensure, and limitations due to the need for physician involvement in billing. The lack of support was evident with issues related to understaffing; difficulty gaining support at the administrative, institutional, or physician level; time constraints; and funding concerns. This study shows that GCs need education, tools, and resources to overcome barriers in implementing new or adapting current SDMs, and there is a need for policy change, including new billing and coverage models.
Magnetic resonance imaging (MRI) surveillance is offered to women with a pathogenic variant in the BRCA1 or BRCA2 gene who face a high lifetime risk of breast cancer. Surveillance with MRI is effective in downstaging breast cancers, but the association of MRI surveillance with mortality risk has not been well defined.
1526 Background: Current National Comprehensive Cancer Network guidelines for genetic/familial high-risk assessment state that testing for highly penetrant breast/ovarian cancer genes is clinically indicated for women with early onset (≤ 45 years) or metastatic HER-2 negative breast cancer. A recent Association of Community Cancer Centers (ACCC) survey (N = 95) showed that > 80% of respondents reported ≤ 50% testing rate of patients with breast cancer who met guidelines. Given this disconnect, ACCC partnered with 15 community cancer programs to assess practice gaps and support interventions to improve access to genetic counseling (GC)/testing. Methods: Pre-intervention data from 9/15 partner programs for women diagnosed with stages 0-III breast cancer between 01/01/2017 and 06/30/2019 was collected. De-identified variables included: family history documentation, GC appointment/test results, and timing of results relative to treatment decisions. Results: There were 2691 women with stages 0-III breast cancer. Forty-eight percent (1284/2691) had a documented high-risk family history, 57% (729/1284) of whom had a GC appointment. This was a significantly higher rate of GC compared to the 23% (181/778) of women with no family history and 6% (35/629) of women with no documentation of family history (p < 0.0001). Patients ≤ 45 years old attended a GC appointment 72% (199/278) of the time and 49% (135/278) had genetic test results, with 84% (113/135) receiving results before surgery. For women with test results available before surgery, 37% (119/322) had breast conserving surgery, compared to 60% (144/240) with test results disclosed post-operatively (p < 0.0001). Conclusions: Genetic testing is underutilized in a community cohort of women with breast cancer. Further analysis is needed to understand the impact genetic test results have on surgical decisions. Opportunities exist to improve current rates of appropriate GC/testing. ACCC will share results of quality improvement projects to illuminate which strategies hold promise in reducing the hereditary breast cancer GC/testing practice gap.
they are the victim of microaggressions: 1: never or almost never to 5: very frequently.The term "microaggressions" was not defined, allowing residents to determine what they feel it to be.Pearson product moment correlation between the two variables was calculated and statistical significance to p<0.05 was determined.Results: 20 out of 27 residents responded to the questionnaire.Seven residents scored for at least mild depression (three severe), nine residents scored for at least mild anxiety (five severe), and 11 residents scored for at least mild stress (one severe).The average rating on the frequency of being the victim of microaggressions was 2.2 (95%CI: 1.6, 2.7), suggesting residents infrequently felt victimized by microaggressions.The Pearson correlation between Depression and the frequency of microaggressions is r=0.56 (p=0.01), between Anxiety and microaggressions is r=0.41 (p=0.07,NS), and between Stress and microaggressions is r=0.63 (p=0.004)Conclusion: This study suggests there is a correlation between depression/stress and a residents' perception of being victimized by microaggressions.It is unclear whether being the victim of microaggression leads to more depression/stress or if residents with more depression/stress view comments as being more insulting.Certainly, this subject merits further study.
Abstract The COVID‐19 pandemic has significantly impacted the service delivery model (SDM) of clinical genetic counseling across the United States and Canada. A cross‐sectional survey was distributed to 4,956 genetic counselors (GCs) from the American Board of Genetic Counselors and Canadian Association of Genetic Counselors mailing lists in August 2020 to assess the change in utilization of telehealth for clinical genetic counseling during the COVID‐19 pandemic compared with prior to the pandemic. Data from 411 eligible clinical genetic counselors on GC attitudes and their experiences prior to and during the pandemic were collected and analyzed to explore the change in SDM, change in appointment characteristics, change in billing practices, GC perceived benefits and limitations of telehealth, and prediction of future trends in SDM in the post‐pandemic era. The study showed the overall utilization of audiovisual and telephone encounters increased by 43.4% and 26.2%, respectively. The majority of respondents who provided audiovisual and telephone encounters reported increased patient volume compared with prior to the pandemic, with an average increase of 79.4% and 42.8%, respectively. There was an increase of 69.4% of GCs rendering genetic services from home offices. The percentage of participants who billed for telehealth services increased from 45.7% before the pandemic to 80.3% during the pandemic. The top GC perceived benefits of telehealth included safety for high‐risk COVID patients (95.2%) and saved commute time for patients (94.7%). The top GC perceived limitations of telehealth included difficulty to conduct physician evaluation/coordinating with healthcare providers (HCP) (73.7%) and difficulty addressing non‐English speaking patients (68.5%). Overall, 89.6% of GCs were satisfied with telehealth; however, 55.3% reported uncertainty whether the newly adopted SDM would continue after the pandemic subsides. Results from this study demonstrate the rapid adoption of telehealth for clinical genetic counseling services as a result of the COVID‐19 pandemic, an increase in billing for these services, and support the feasibility of telehealth for genetic counseling as a longer term solution to reach patients who are geographically distant.
Tumor profiling (TP) is primarily used to identify driver mutations within a tumor for treatment purposes, but it may also identify germline mutations. Current involvement of cancer genetic counselors (GCs) in the TP process is not clear. Members of the National Society of Genetic Counselors Cancer Special Interest Group were invited to participate in a confidential, web-based survey to characterize current practices and attitudes related to the use of TP. Of 105 useable responses, 86.7% of GCs reported their institutions were using TP, although only 6.7% did this routinely. Although 63.7% reported personal involvement in the process, largely with result interpretation and follow-up germline testing, 69.7% reported seeing fewer than 5 patients for this reason and 97.9% desired further education on this topic. Work and regional setting were not predictors of involvement with TP; however, GCs in the academic setting were less aware of who obtains consent (p = 0.001). GCs reported they were not often utilized as a resource regarding TP. Overall, GCs believed TP is beneficial in identifying hereditary cancer syndromes, although most reported finding a germline mutation in <10% of cases. This study provides a snapshot of current GC involvement with TP, and documents the desire by GCs for additional education on tumor profiling.
Precision medicine aims to approach disease treatment and prevention with consideration of the variability in genes, environment, and lifestyle for each person. This focus on the individual is also key to the practice of genetic counseling, whereby foundational professional values prioritize informed and autonomous patient decisions regarding their genetic health. Genetic counselors are ideally suited to help realize the goals of the precision medicine. However, a limited genetic counseling workforce at a time in which there is a rapidly growing need for services is challenging the balance of supply and demand. This article provides historical context to better understand what has informed traditional models of genetic counseling and considers some of the current forces that require genetic counselors to adapt their practice. New service delivery models can improve access to genetic healthcare by overcoming geographical barriers, allowing genetic counselors to see a higher volume of patients and supporting other healthcare providers to better provide genetic services to meet the needs of their patients. Approaches to genetic counseling service delivery are considered with a forward focus to the challenges and opportunities that lie ahead for genetic counselors in this age of precision health.
There is no doubt that having a board-certified genetic counselor on your cancer care team is a great asset, but I often hear about how difficult it is to hire one. Interest in the field is high. T...