Research Grants Awarded
Telemedicine vs. Face-to-Face Cancer Genetic Counseling in Rural Oncology Clinics
Breast Cancer Disparities
Cancer genetic counseling (CGC) is standard of care for women in whom a hereditary breast cancer syndrome is suspected. However, limited access to counseling in rural communities prevents many women from realizing the benefits of CGC, which U.S. Preventive Services Task Force described in 2005 as "substantial." Rural North Carolina residents are no exception. Only two North Carolina cancer genetic counselors practice in rural clinics - each only on a limited basis. For the last 18 months, we have offered monthly opportunities for CGC in several rural North Carolina oncology clinics with substantial populations of historically underserved groups (e.g., African Americans, Native Americans). Satisfaction is high among women who have received counseling in these clinics but, because of inefficiency associated with the counselor's traveling, wait times for appointments still prevent many recently diagnosed women from receipt of the timely service that would allow for incorporating genetic test results into their treatment decisions. Telemedicine (TM) may improve access to CGC in a more timely and efficient manner. Although data from studies of TM in other specialties show that TM improves access to medical care in underserved communities and patients tend to be quite satisfied with receiving care via TM, little is known about specific cost effectiveness and satisfaction associated with CGC delivered via TM. Therefore, we propose a controlled trial comparing cost-effectiveness and patient satisfaction between CGC delivered face-to-face (FTF) and via TM in four rural North Carolina oncology clinics. Specific aims are to: 1) Compare patient satisfaction with TM counseling vs. FTF counseling, as measured by validated patient satisfaction survey; and 2) Compare cost-effectiveness of TM counseling with FTF counseling, as determined by cost analyses at study's end. We will use a randomized, 2-group research design. Individuals referred to CGC as part of usual care will be randomly assigned to TM or FTF. Participants in both groups will come to their community clinic to receive standard-of-care genetic counseling for hereditary breast cancer syndromes; only the method of delivery will differ (e.g., communication with the genetic counselor via low-cost web camera technology versus meeting with the counselor face-to-face). One week post-counseling, participants in each group will be called to complete a telephone survey assessing satisfaction with CGC. Cost-effectiveness of TM vs. FTF counseling will be assessed by measuring, throughout the study, length of wait time for appointment and costs of equipment, labor, and travel. If results demonstrate that TM cancer genetic counseling is acceptable to patients and is cost-effective, TM counseling can be readily disseminated to other underserved communities within North Carolina.
Cancer genetic counseling (CGC) has been found to have "substantial" benefits for individuals with breast cancer and their family members; it has been deemed by multiple organizations as "standard of care" for women with breast cancer. During CGC sessions, counselors meet with individuals at risk of having a hereditary cancer (one that runs in families) to discuss features of hereditary cancers, ways to manage cancer risk, and psychosocial consequences of cancer. Knowing whether a cancer is hereditary can have implications for treatment (e.g., deciding what type of breast surgery to have) and for prevention and early detection of future cancers in patients and family members. Documented benefits of CGC include: effective delivery of complex information; facilitating informed decisions for treatment, prevention and early detection; decreases in cancer worry and anxiety; and enhanced cancer risk-related communication among family members. Unfortunately, there is a disparity in access to CGC, especially among women who live in rural and underserved areas. In North Carolina, only two cancer genetic counselors practice in rural clinics - each only for a few days per month. One of these counselors is a member of our team who, for the last 18 months, has offered monthly CGC in several rural North Carolina oncology clinics with substantial populations of historically underserved groups (e.g., African Americans, Native Americans). Women who have received CGC in these clinics have been quite satisfied, but inefficiency associated with the counselor's traveling and wait times for appointments has limited access and has kept recently diagnosed women from being able to have CGC before they need to make treatment decisions. Therefore, in an effort to make CGC more widely available in a timely manner, we propose to test provision of counseling through telemedicine (TM), in which a patient and health care provider communicate with each other using videoconferencing. TM has shown promise in many medical specialties (e.g., dermatology). TM has been tried on a limited basis for genetic counseling, but we need to determine how it compares to face-to-face (FTF) counseling, in terms of patients' satisfaction with their care and cost effectiveness of providing the care. In 4 rural oncology clinics, we will implement low-cost TM and compare satisfaction and cost-effectiveness between groups of women designated to have their CGC session by TM or FTF. We'll use a validated measure to assess satisfaction by a phone survey one week after the CGC appointment; cost-effectiveness will be measured at project?s end by calculating length of wait time for appointment and costs of equipment, labor, and mileage. If we find that TM is as satisfactory as FTF counseling and TM is a more cost-effective way to provide this beneficial service, we will be poised to quickly disseminate access to counseling via TM to many other rural communities throughout the Southeast.