Genetic counseling service delivery models: A study of genetic counselors’ interests, needs, and barriers to implementation

Abstract

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.

Genetic counselor experiences with telehealth before and after COVID‐19

“…This is consistent with Zierhut et al., ( 2018 ) in which 30% of respondents indicated billing and reimbursement was a perceived barrier. Other surveys of genetic counselors have also highlighted the challenges of billing and insurance reimbursement (Bergstrom et al., 2020 ; Boothe et al., 2020 ). Although this frustration is not limited to genetic counselors, payer and regulatory changes in response to the onset of COVID‐19 enabled Medicare reimbursement for telehealth services by other providers (Chen et al., 2020 ) but not for genetic counselors.…”

Financial constraints on genetic counseling and further risk‐management decisions among U.S. women at elevated breast cancer risk

“…Unfortunately, genetic counselors are often not available at the same hospital or clinic as the referring provider; both genetic counseling practices and patients would benefit from more systematic linkages between genetic counseling services and referring providers from academic medical hospitals, public hospitals, private practices, and other clinics (Boothe et al, 2020). The importance of further study and development of care coordination methods was illuminated by the stories of several study participants, who became aware or underwent genetic testing through a physician but then did not receive proper follow-up information or support, and those who experienced high administrative burdens related to insurance.…”

“…Most genetic counseling practices currently lack supportive staff, but additional staff members will likely be necessary to manage the additional work involved if a higher proportion of patients are able to connect to genetic counseling (Boothe et al, 2020). Incorporating patient education services into genetic counseling practices may improve patient access and outcomes.…”

“…Innovative methods to increase access for underserved populations, such as genetic counseling through telehealth, need to be systematically tested and implemented (Bhola et al, 2019). Supportive services are known to increase medical care access among racial and ethnic minorities and individuals with low income by helping underserved patients overcome institutional barriers-a major access-related priority reported by the National Society of Genetic Counselors Service Delivery Model Task Force (Bellcross et al, 2013;Boothe et al, 2020).…”

Democratizing genomics: Leveraging software to make genetics an integral part of routine care

“…In a survey of 30 genetic counselors, reasons for utilizing (or not) alternative counseling methods included patient volume, available resources, the complexities of implementation, and the impact on patient‐provider relationships (Khan, Cohen, Weir, & Greenberg, 2020). Genetic counselors who have conducted telehealth genetic counseling expressed high satisfaction with this method of counseling despite concerns regarding reimbursement issues (Boothe, Greenberg, Delaney, & Cohen, 2020; Zierhut, MacFarlane, Ahmed, & Davies, 2018). Further, remote genetic counseling has been well‐received among patients (Abrams & Geier, 2006; Bradbury et al, 2016; Buchanan et al, 2015; Butrick et al, 2015; Fournier, Bazzell, & Dains, 2018; Hann et al, 2017; McCuaig et al, 2018).…”