In-person Genetic Counseling Research Articles

Return of individual genetic results in a high-risk sample: enthusiasm and positive behavioral change.

PurposeThe goal of this study is to examine participant responses to disclosure of genetic results in a minority population at high-risk for depression and anxiety.Methods82 subjects in a genetic study of nicotine dependence were offered personalized genetic results: all were nicotine dependent and 64% self-identified as African American. Pathway Genomics was used to evaluate genetic risks for 5 complex diseases. Participants returned 4–8 weeks following enrollment for in-person genetic counseling interviews and evaluation of baseline measures. A telephone follow-up was performed 4–8 weeks later to assess responses to results.Results50 of the 82 subjects (61%) were interested in receiving genetic results. These participants had multiple risk factors, including high baseline measures of depression (66%) and anxiety (32%), as well as low rates of employment (46%), adequate health literacy (46%), and health insurance (45%). Pathway Genomics reported “increased risk” for at least one disease in 77% of subjects. 95% of participants reported that they appreciated the genetic results, and receiving these results was not associated with changes in symptoms of depression or anxiety. Furthermore, after return of genetic results, smoking cessation attempts increased (p=0.003).ConclusionEven in an underserved population at high-risk for adverse psychological reactions, subjects responded positively to personalized genetic results.

Is It Time to Embrace Telephone Genetic Counseling in the Oncology Setting?

Is It Time to Embrace Telephone Genetic Counseling in the Oncology Setting?

Randomized Noninferiority Trial of Telephone Versus In-Person Genetic Counseling for Hereditary Breast and Ovarian Cancer

Although guidelines recommend in-person counseling before BRCA1/BRCA2 gene testing, genetic counseling is increasingly offered by telephone. As genomic testing becomes more common, evaluating alternative delivery approaches becomes increasingly salient. We tested whether telephone delivery of BRCA1/2 genetic counseling was noninferior to in-person delivery. Participants (women age 21 to 85 years who did not have newly diagnosed or metastatic cancer and lived within a study site catchment area) were randomly assigned to usual care (UC; n = 334) or telephone counseling (TC; n = 335). UC participants received in-person pre- and post-test counseling; TC participants completed all counseling by telephone. Primary outcomes were knowledge, satisfaction, decision conflict, distress, and quality of life; secondary outcomes were equivalence of BRCA1/2 test uptake and costs of delivering TC versus UC. TC was noninferior to UC on all primary outcomes. At 2 weeks after pretest counseling, knowledge (d = 0.03; lower bound of 97.5% CI, -0.61), perceived stress (d = -0.12; upper bound of 97.5% CI, 0.21), and satisfaction (d = -0.16; lower bound of 97.5% CI, -0.70) had group differences and confidence intervals that did not cross their 1-point noninferiority limits. Decision conflict (d = 1.1; upper bound of 97.5% CI, 3.3) and cancer distress (d = -1.6; upper bound of 97.5% CI, 0.27) did not cross their 4-point noninferiority limit. Results were comparable at 3 months. TC was not equivalent to UC on BRCA1/2 test uptake (UC, 90.1%; TC, 84.2%). TC yielded cost savings of $114 per patient. Genetic counseling can be effectively and efficiently delivered via telephone to increase access and decrease costs.

A randomized trial of telephone versus in-person disclosure of BRCA 1/2 results.

1538 Background: While some providers use telephone to share genetic test results, there is limited data on the efficacy and impact on patient cognitive and emotional responses. Methods: Patients who completed in-person genetic counseling for BRCA 1/2 testing were randomized to telephone (TD) or in-person (IPD) disclosure. Baseline (BL) and post-disclosure (PD) surveys assessed knowledge, satisfaction and psychological factors. We used T-tests and multiple linear regressions. Results: 179 patients (68% of approached),126 (72%) agreed to be randomized; 36 (28%) declined randomization (Self-select IPD). Patient characteristics did not differ between arms. Change in knowledge, satisfaction and psychological factors did not differ between TD and IPD (Table). Self-select IPD participants had greater declines in depression and state anxiety (Table). In multivariable models, history of cancer was associated with greater declines in general anxiety (coef -1.4, p=0.01). BRCA+ results were associated with greater increases in knowledge (coef 3.2, p 0.02) and state anxiety (coef 12.0, p<0.01), and declines in satisfaction (coef -6.6, p<0.01). Having a mutation in the family was associated with greater declines in intrusive thoughts (coef -4.8, p<0.01). Conclusions: In general,telephone disclosure of BRCA1/2 results does not appear to negativelyimpact psychological outcomes but outcomes among carriers (BRCA+) differ. Larger studies are needed to understand the impact among subgroups and more diverse populations. Some patients preferred in-person communication and had different outcomes, suggesting more data is needed before telephone disclose is universally adopted. [Table: see text]

Identification of Genetic Counseling Service Delivery Models in Practice: A Report from the NSGC Service Delivery Model Task Force

Increasing demand for genetic services has resulted in the need to evaluate current service delivery models (SDMs) and consider approaches that improve access to and efficiency of genetic counseling (GC). This study aimed to describe SDMs currently used by the GC community. The NSGC membership was surveyed regarding the use of four SDMs: in-person GC, telephone GC, group GC, and telegenetics GC. Variables related to access and components of use were also surveyed, including: appointment availability, time-per-patient, number of patients seen, billing, and geographic accessiblity. Seven hundred one usable responses were received. Of these, 54.7% reported using an in-person SDM exclusively. The remainder (45.3%) reported using multiple SDMs. Telephone, group and telegenetics GC were used often or always by 8.0%, 3.2% and 2.2% of respondents, respectively. Those using an in-person SDM reported the ability to see the highest number of patients per week (p < 0.0001) and were the most likely to bill in some manner (p < 0.0001). Those using telegenetic and telephone GC served patients who lived the furthest away, with 48.3% and 35.8%% respectively providing GC to patients who live >4h away. This study shows that genetic counselors are incorporating SDMs other than traditional in-person genetic counseling, and are utilizing more than one model. These adaptations show a trend toward shorter wait time and shorter length of appointments. Further study is indicated to analyze benefits and limitations of each individual model and factors influencing the choice to adopt particular models into practice.

Abstract A34: Short-term evaluation of telephone-based genetic counseling for hereditary breast and ovarian cancer among African American women: A pilot study

Abstract Introduction: Genetic counseling (GC) services for inherited breast and ovarian cancer (HBOC) are underutilized by African American (AA) women. One barrier may be availability of in-person GC services. Telephone-based counseling may be one way to increase access to GC services. However, little is known about AA women's reactions to and satisfaction with phone-based GC services. We sought to evaluate experiences associated with phone-based GC for HBOC among AA women diagnosed with early-onset breast cancer. Methods: Through a cancer registry-based study, phone-based GC for HBOC was provided to AA women diagnosed with breast cancer at or before age 50. A brief baseline survey to evaluate the experience with the GC and testing process was administered when women were being scheduled to receive results of BRCA testing. After phone-based results disclosure with a genetic counselor, a follow-up phone survey was administered to assess results disclosure experiences. Results: To date, baseline and follow-up surveys have been completed by 33 (72%) of 46 women who completed pre-test GC. Findings from the baseline questionnaire (n=36) showed that the majority of women were glad to have pursued testing (95%), felt that they had taken charge of their healthcare (90%), and were pleased with the telephone GC provided through the study (71 %). Almost 40% of participants indicated that the GC and testing process increased their feelings of control and empowerment. Among the follow-up survey participants (n=33), the majority indicated very positive experiences with various aspects of phone-based results disclosure. Conclusion: Our results suggest that telephone-based GC and testing for HBOC in a registry-based sample of AA women was perceived favorably by participants. Thus, telephone-based GC may be one approach to reduce barriers in access to GC and testing services in the AA community. Citation Information: Cancer Epidemiol Biomarkers Prev 2010;19(10 Suppl):A34.

Controversies in Communication of Genetic Screening Results for Cancer: A Report from the American Society of Preventive Oncology's Screening Special Interest Group (ASPO's 33rd Annual Meeting, March 8 to 10, 2009, Tampa, Florida)

Genetic screening for cancer susceptibility for many cancer sites has become routine for high-risk populations, particularly breast, ovarian, and colon cancer. Such genetic tests hold great promise for informing tailored cancer prevention and risk reduction recommendations. Heightened consumer