Evolution and growth of the ECHO (Enriching Communication skills for Health professionals in Oncofertility) program: a 5-year study in the training of oncofertility professionals.

PURPOSE: AYAs with cancer have unique psychosocial needs, with reproductive health being a primary concern. The ECHO training program provides reproductive health communication training to individuals providing care for AYAs with cancer. The purpose of this project is to describe the growth of ECHO and evaluate changes in learner engagement over a 5-year period. METHODS: ECHO is an 8-week online training program offered annually, with the program including learning modules, discussion topics and reflections, and synchronous discussions. Reflection quality scores and number of words were compared between the 5 cohorts using ANOVA with a p < .05 level of significance. Descriptive statistics summarized module topics, reflections, and synchronous discussions. RESULTS: The average number of reflections per unique learner increased each year (1.4 in cohort 1 vs 4.1 in cohort 5), as did average length and quality of reflections (72.1 words in cohort 1 vs 203.4 words in cohort 5, p < .0001; score of 1.21 in cohort 1 vs 4.46 in cohort 5, p < .0001). The percentage of learners in attendance at synchronous discussions increased between cohorts 4 and 5 (4.8% of learners in cohort 4 vs 18.8% of learners cohort 5). CONCLUSIONS: The ECHO program has seen significant growth and improvement in learner engagement over a 5-year period. This is particularly important given that student learning outcomes in online courses can be predicted by the level of engagement with online content. IMPLICATIONS FOR CANCER SURVIVORS: As fertility and reproductive health remain a top life goal and discussion priority for AYAs surviving cancer, increasing clinical competencies of AHPs in oncofertility is essential.

"No one size fits all" A Multi-Method Survey of Oncology Allied Health Professionals Experiences with Lesbian, Gay, Bisexual, Transgender/Queer Questioning Adolescent, and Young Adult Patients with Cancer and Reproductive and Sexual Health".

Objectives: To assess training needs for providers who care for adolescent and young adult (AYA) lesbian, gay, bisexual, transgender/queer questioning (LGBTQ) cancer patients, we conducted a mixed-method survey. During their cancer care experience, AYA cancer patients experience physical, psychosocial, and reproductive health challenges. In addition to these challenges, AYA LGBTQ individuals are a diverse and medically underserved population who experience unique challenges and disparities in medical care. Methods: Health care providers (n = 351) who participated in our reproductive health in cancer training program completed a survey with 28 quantitative items and 4 open-ended items assessing knowledge, confidence discussing reproductive health, and confidence in knowledge specific to reproductive needs and general health needs among AYA LGBTQ patients. Results: Confidence discussing and confidence in knowledge of reproductive and general health needs are lower regarding transgender and nonbinary patients. Nearly half of providers (45%) demonstrated low knowledge, while 38% and 17% demonstrated moderate and high knowledge, respectively. Open comments indicated providers desired more training around the needs of Trans and nonbinary patients, and creating welcoming environments. Conclusions: The majority of our participants demonstrate low or moderate knowledge regarding factors that can influence AYA LGBTQ patient care, suggesting that this is a key area for improvement. Furthermore, improving provider knowledge may subsequently improve confidence in general and reproductive needs of LGBTQ patients, resulting in improved patient-centered care. Improving provider knowledge and confidence may then ultimately help reduce disparities in cancer care among this patient population.

The LOvE ECHO Training: Developing a Web-Based LGBTQ Cultural Competency Training Module for Oncology Allied Health Professionals.

Purpose: This article describes the development of the LGBTQ Oncofertility Education (LOvE-ECHO). The Enriching Communication skills for Health professionals in Oncofertility (ECHO) team created this new education module in response to the needs of oncology allied health professionals to provide inclusive and affirming care to lesbian, gay, bisexual, transgender, and queer (LGBTQ) AYA patients with cancer. The new module is part of the ECHO, a web-based educational training program for oncology allied health professionals to improve communication with AYA about reproductive health. Methods: The development of LOvE-ECHO includes five phases-learner needs assessment, content development and revision, piloting, and finalizing. Results from a survey of past ECHO learners and a comprehensive literature review provided the basis of need for this module and identified the most prominent gaps in knowledge and training. Content development and revision were iterative, including input, feedback, and voices from LQBTA youth and survivors, researchers, reproductive health experts, oncology clinicians, and web developer. Results: The complete LOvE-ECHO module consists of both didactic and interactive lessons. A glossary of terms and narrated PowerPoint establishes a knowledge base and shared vocabulary. Three interactive cases and a plan for action provide learners opportunities to test their new knowledge and transfer it to their practice. Conclusion: The module has received positive feedback to date. It is currently being piloted with new learners who complete a pre-test and post-test, as well as a feedback survey. Analysis of these results will inform revisions to the module.

Distribution of Estimated Lifetime Breast Cancer Risk Among Women Undergoing Screening Mammography.

OBJECTIVE. Supplemental screening breast MRI is recommended for women with an estimated lifetime risk of breast cancer of greater than 20-25%. The performance of risk prediction models varies for each individual and across groups of women. The present study investigates the concordance of three breast cancer risk prediction models among women presenting for screening mammography. SUBJECTS AND METHODS. In this prospective study, we calculated the estimated lifetime risk of breast cancer using the modified Gail, Tyrer-Cuzick version 7, and BRCAPRO models for each woman who presented for screening mammography. Per American Cancer Society guidelines, for each woman the risk was categorized as less than 20% or 20% or greater as well as less than 25% or 25% or greater with use of each model. Venn diagrams were constructed to evaluate concordance across models. The McNemar test was used to test differences in risk group allocations between models, with p ≤ .05 considered to denote statistical significance. RESULTS. Of 3503 screening mammography patients who underwent risk stratification, 3219 (91.9%) were eligible for risk estimation using all three models. Using at least one model, 440 (13.7%) women had a lifetime risk of 20% or greater, including 390 women (12.1%) according to the Tyrer-Cuzick version 7 model, 18 (0.6%) according to the BRCAPRO model, and 141 (4.4%) according to the modified Gail model. Six women (0.2%) had a risk of 20% or greater according to all three models. Women were significantly more likely to be classified as having a high lifetime breast cancer risk by the Tyrer-Cuzick version 7 model compared with the modified Gail model, with thresholds of 20% or greater (odds ratio, 6.4; 95% CI, 4.7-8.7) or 25% or greater (odds ratio, 7.4; 95% CI, 4.7-11.9) used for both models. CONCLUSION. To identify women with a high lifetime breast cancer risk, practices should use estimates of lifetime breast cancer risk derived from multiple risk prediction models.

Characterizing patient-oncologist communication in genomic tumor testing: The 21-gene recurrence score as an exemplar.

OBJECTIVE: Women with early-stage, ER + breast cancer are recommend to receive genomic profiling tests, such as the 21-gene Recurrence Score (RS) test, to guide treatment decisions. We examined test- and treatment-related information discussed and the associations between RS categories and aspects of communication during patient-oncologist clinical encounters. METHODS: As part of a larger trial, clinical encounters (N = 46) were audiorecorded and coded for 1) RS- and treatment-related information, 2) shared decision making, 3) patient active participation, and 4) oncologist patient-centered communication. We examined differences by RS category using mixed models, adjusting for nesting within oncologist. RESULTS: Patients with a high RS were more likely to receive a chemotherapy recommendation (p < .01), hear about the risks/side effects of chemotherapy (p < .01), and offer their preferences (p = .02) than those with intermediate or low RS. Elements of shared decision making increased with RS. Oncologist patient-centered communication (M = 4.09/5, SD = .25) and patient active participation (M = 3.5/4, SD = 1.0) were high across RS. CONCLUSION: Findings suggest that disease severity, rather than clinical uncertainty, impact treatment recommendations and shared decision making. PRACTICE IMPLICATIONS: Oncologists adjust test- and treatment-related information and shared decision making by disease severity. This information provides a framework to inform decision making in complex cancer and genomics settings.

"I think that a brief conversation from their provider can go a very long way": Patient and provider perspectives on barriers and facilitators of genetic testing after ovarian cancer.

OBJECTIVE: Identify predisposing, enabling, and reinforcing factors impacting genetic counseling/testing among ovarian cancer patients guided by Green and Kreuter's PRECEDE-PROCEED model. METHODS: Gynecologic oncology providers (N = 4), genetic counselors (N = 4), and ovarian cancer patients (N = 9) completed semi-structured qualitative interviews exploring participants' knowledge of and experiences with genetic counseling/testing. Interviews were audio recorded, transcribed verbatim, and analyzed using inductive content analysis by two independent raters. RESULTS: Thematic analysis identified predisposing, enabling, and reinforcing factors impacting referral for and uptake of genetic counseling/testing. Predisposing factors included participant's knowledge, beliefs, and attitudes related to genetic counseling/testing. Both patients and providers also cited that insurance coverage and out-of-pocket cost are major concerns for ovarian cancer patients considering genetic testing. Finally, both patients and providers emphasized that genetic counseling/testing would provide additional information to an ovarian cancer patient. While providers emphasized that genetic testing results were useful for informing a patient's personal treatment plan, patients emphasized that this knowledge would be beneficial for their family members. CONCLUSION: Barriers to genetic testing for ovarian cancer patients exist at multiple levels, including the patient (e.g., knowledge, attitudes), the provider (e.g., workload, availability of services), the institution (e.g., difficulty with referrals/scheduling), and the healthcare system (e.g., insurance/cost). Interventions aiming to increase genetic testing among ovarian cancer patients will likely need to target multiple levels of influence. Future quantitative studies are needed to replicate these results. This line of work will inform specific multilevel intervention strategies that are adaptable to different practice settings, ultimately improving guideline concordant care.

Question Prompt List to Support Patient-Provider Communication in the Use of the 21-Gene Recurrence Test: Feasibility, Acceptability, and Outcomes.

PURPOSE: The 21-gene recurrence score (RS) assay is used to guide breast cancer treatment decisions but can be poorly understood by patients. We examined the effects of a question prompt list (QPL) on knowledge, distress, and decisional conflict related to genomic testing and treatment in early-stage breast cancer. METHODS: We describe the feasibility and acceptability of the QPL and the impact of the QPL on knowledge, distress, and decisional conflict before and after the receipt of the QPL (MEND 2, N = 65). We also compared distress and decisional conflict between women who received the QPL (MEND 2, N = 65) and a comparable group of women who did not receive the QPL who participated in an earlier observational study within the same clinics (MEND 1, N = 136). RESULTS: MEND 2 participants indicated high acceptability and feasibility using the QPL. Knowledge increased post-QPL (P < .01) but did not decrease distress. Decisional conflict was lower among women in MEND 2 compared with those in MEND 1 (P < .01), with no statistically significant differences in distress. CONCLUSION: The findings suggest that the QPL is feasible, acceptable, can improve knowledge and decrease decisional conflict in the large group of women deciding treatment while integrating RS test results.

Patterns and covariates of benefit finding in young Black breast cancer survivors: A longitudinal, observational study.

OBJECTIVE: To examine the patterns and covariates of benefit finding over time among young Black breast cancer (BC) survivors. METHODS: Black women (N = 305) with invasive BC diagnosed ≤50 years were recruited an average of 1.9 years post-BC diagnosis. Participants completed self-report questionnaires of benefit finding, social support, and illness intrusions at three time points (M time since BC diagnosis: T2 = 3.1 years, T3 = 4.0 years). Relationships between posttraumatic growth constructs (social support, illness intrusions) and benefit finding over time were examined using mixed models. Models controlled for cultural variables (religiosity, time orientation, and collectivism), receipt of chemotherapy, general health status, and partner status. RESULTS: Participants reported high levels of benefit finding (M = 2.99, SE = 0.04 on a 0-4 scale). When accounting for covariates, benefit finding did not change over time since BC diagnosis (P = .21). Benefit finding scores at BC diagnosis were associated with more illness intrusions, greater religiosity, and having received chemotherapy (all Ps < .04). Social support was associated with change in benefit finding scores over time, such that a 1-point increase in social support was associated with a 0.05 increase in benefit finding per year (P = .02). CONCLUSIONS: This study addresses key gaps in knowledge regarding benefit finding among Black cancer survivors. Consistent with findings from majority White samples, social support and illness intrusions appear to play a key role in benefit finding in Black BC survivors. Cultural constructs-including religiosity-must also be considered in future studies of benefit finding among minority populations.

A Framework for Pilot Testing Health Risk Video Narratives.

Narrative messages may be superior to didactic messages when providing educational information due to their natural format for information sharing, ability to engage audiences, and engender positive thoughts about the message. Although narrative messages are gaining popularity in health promotion, little guidance exists regarding the development phase. Our team created a psychosocial narrative video intervention grounded in the Health Belief Model to increase breast cancer survivors' attendance at genetic counseling after treatment. Here we report the use of Learner Verification (LV) during an iterative video development process. Using LV, we conducted individual semi-structured interviews with patients and providers, after they viewed the video. Demographic information was analyzed using descriptive statistics, and verbatim interview transcripts were used to conduct a two-phase qualitative content analysis. Patient and provider participants (n = 30) believed the video was attractive, relatable, and informative, and they identified areas for improvement including narrative coherence, changes to text and graphical information, and including more specific information. LV framework elicited audience feedback on the video intervention relevant to theoretical principles of narrative interventions, and highlighted audience preferences. In this study, LV interviews tapped into theoretical constructs of narratives and facilitated the iterative intervention design process.

Impact of Genetic Testing on Risk-Management Behavior of Black Breast Cancer Survivors: A Longitudinal, Observational Study.

BACKGROUND: Black women are overrepresented among premenopausal breast cancer (BC) survivors. These patients warrant genetic testing (GT) followed by risk-reducing behaviors. This study documented patterns and predictors of cancer risk-management behaviors among young black BC survivors after GT. METHODS: Black women (n = 143) with a diagnosis of BC at the age of 50 years or younger received GT. At 1 year after GT, participants reported receipt of risk-reducing mastectomy, risk-reducing salpingo-oophorectomy, mammogram, breast magnetic resonance imaging (MRI), CA125 test, and transvaginal/pelvic ultrasound. Logistic regression was used to examine predictors of BC risk management (risk-reducing mastectomy or breast MRI) and ovarian cancer risk management (risk-reducing salpingo-oophorectomy, CA125 test, or transvaginal/pelvic ultrasound). RESULTS: Of the study participants, 16 (11%) were BRCA1/2-positive, 43 (30%) had a variant of uncertain significance, and 84 (59%) were negative. During the 12 months after GT, no women received risk-reducing mastectomy. The majority (93%) received a mammogram, and a smaller proportion received breast MRI (33%), risk-reducing salpingo-oophorectomy (10%), CA125 test (11%), or transvaginal/pelvic ultrasound (34%). Longer time since the BC diagnosis predicted lower likelihood of BC risk management (odds ratio [OR] 0.54). BRCA1/2 carrier status (OR 4.57), greater perceived risk of recurrence (OR 8.03), and more hereditary breast and ovarian cancer knowledge (OR 1.37) predicted greater likelihood of ovarian cancer risk management. CONCLUSIONS: Young black BC survivors appropriately received mammograms and ovarian cancer risk management based on their BRCA1/2 test result. However, the low usage of MRI among BRCA1/2 carriers contrasts with national guidelines. Future research should examine barriers to MRI among black BC survivors. Finally, modifiable variables predicting risk management after GT were identified, providing implications for future interventions.

Patterns and predictors of genetic referral among ovarian cancer patients at a National Cancer Institute-Comprehensive Cancer Center.

Germline mutations (eg, BRCA1/2) have prognostic and treatment implications for ovarian cancer (OVCA) patients. Thus, national guidelines recommend genetic testing for OVCA patients. The present study examines patterns and predictors of genetics referral in OVCA patients. Electronic medical record data were abstracted retrospectively from 557 OVCA patients treated from 1 January 2001 to 31 December 2015. Logistic regression models identified sociodemographic characteristics, disease/treatment characteristics, family history data, provider characteristics, and survival data that predicted genetics referral. Overall, 27.5% of patients received referral. Eleven variables predicting referral were selected during stepwise regression: younger age, White race, not having private insurance, professional school education, year of OVCA diagnosis, platinum sensitivity, female gynecologic oncologist, chemotherapy administered by a gynecologic oncologist, clinical trial enrollment, longer overall survival, and family history of OVCA. Genetics referral among OVCA patients was similar to rates reported nationwide. Unique predictive factors will contribute to quality improvement and should be validated at a multi-institutional level to ensure guideline concordant care is provided to all OVCA patients. Future research should identify both patient-level and provider-level factors associated with genetics referral.

Current Approaches to Cancer Genetic Counseling Services for Spanish-Speaking Patients.

Barriers to genetic counseling services (GCS) utilization for Spanish-speaking patients (SSP) may include language barriers and limited availability of bilingual genetic counselors (GCs). The sample included GCs who: (1) practice cancer genetic counseling, (2) report a cancer practice setting, and (3) have a US mailing address. We assessed: (1) number of Spanish-speaking GCs, (2) estimated proportion of Hispanic patients, and (3) approaches used to counsel SSP. Of respondents (n = 229), 10% (n = 23) spoke Spanish. A higher proportion of GCs practicing in states with ≥ 25% Hispanics reported speaking Spanish compared to those in states with lower Hispanic populations (p = 0.02). While there was a significantly higher percentage of Spanish-speaking GCs in states with larger Hispanic populations, the absolute number was low and unlikely to meet the needs of patients. There is need to increase availability of GCS for SSPs and to understand the impact of services on patient health outcomes.

From the laboratory to the clinic: sharing BRCA VUS reclassification tools with practicing genetics professionals.

Despite ongoing research efforts to reclassify BRCA variant of uncertain significance (VUS), results for strategies to disseminate findings to genetic counselors are lacking. We disseminated results from a study on reclassification of BRCA VUS using a mailed reclassification packet including a reclassification guide, patient education aid, and patient letter template for patients/families with BRCA VUS. This study reports on genetic counselors' responses to the dissemination materials. Eligible participants (n = 1015) were identified using mailing lists from professional genetics organizations. Participants were mailed a BRCA VUS reclassification packet and a return postcard to assess responses to the materials. Closed-ended responses were analyzed using descriptive statistics, and thematic analysis was conducted on open-ended responses. In response to the mailing, 128 (13.0%) genetic counselors completed and returned postcards. The majority of respondents (n = 117; 91.4%) requested the patient letter template and patient education guides as PDFs (n = 122; 95.3%). The majority (n = 123; 96.9%) wanted an updated reclassification guide upon availability. Open-ended responses demonstrate the material was well-received; some specified they would tailor the patient letter to fit their practice and patients' needs. Participants requested additional patient and provider educational materials for use in practice. Materials communicating BRCA VUS reclassification updates were liked and were likely to be used in practice. To achieve the benefits of VUS reclassification in clinical practice, ongoing efforts are needed to continuously and effectively disseminate findings to providers and patients.

Health-related quality of life in Black breast cancer survivors with and without triple-negative breast cancer (TNBC).

PURPOSE: Black women are more likely to develop early-onset (≤50 years) breast cancer (BC) and have the lowest five-year, cause-specific survival rate of any United States (U.S.) racial or ethnic group. These disparities can be attributed partially to the higher rate of triple-negative BC (TNBC) in Blacks. Yet, little is known about health-related quality of life (HRQOL) among Black women with TNBC. METHODS: Black women with invasive BC ≤ 50 years were recruited via the Florida Cancer Data System as part of a population-based case-only study of etiology and outcomes of early-onset invasive BC. Of 460 consented participants, a subset of 355 self-reported sociodemographic, clinical, and psychosocial variables. Descriptive analyses included participants with known TNBC (n = 85) or non-TNBC (n = 245) disease. Univariable and multivariable analyses were conducted to examine differences in factors associated with HRQOL. RESULTS: In unadjusted analyses, TNBC participants had significantly lower FACT-B total scores (90.1 ± 27.9) compared to non-TNBC (98.5 ± 27.6) participants (p < 0.05). For the TNBC group, multivariable analyses indicated five individual-level, and three systemic-level factors explain 80% of the response variation in HRQOL. For the non-TNBC group, seven individual-level factors and three systemic-level factors account for 76% of the variation in HRQOL scores. CONCLUSIONS: Compared to Black women with non-TNBC, TNBC women have worse HRQOL. There are key individual and systemic-level factors that are unique to both groups. Findings can inform future HRQOL interventions to support young Black BC survivors.

Genomic Disparities in Breast Cancer Among Latinas.

BACKGROUND: Breast cancer is the most common cancer diagnosed among Latinas in the United States and the leading cause of cancer-related death among this population. Latinas tend to be diagnosed at a later stage and have worse prognostic features than their non-Hispanic white counterparts. Genetic and genomic factors may contribute to observed breast cancer health disparities in Latinas. METHODS: We provide a landscape of our current understanding and the existing gaps that need to be filled across the cancer prevention and control continuum. RESULTS: We summarize available data on mutations in high and moderate penetrance genes for inherited risk of breast cancer and the associated literature on disparities in awareness of and uptake of genetic counseling and testing in Latina populations. We also discuss common genetic polymorphisms and risk of breast cancer in Latinas. In the treatment setting, we examine tumor genomics and pharmacogenomics in Latina patients with breast cancer. CONCLUSIONS: As the US population continues to diversify, extending genetic and genomic research into this underserved and understudied population is critical. By understanding the risk of breast cancer among ethnically diverse populations, we will be better positioned to make treatment advancements for earlier stages of cancer, identify more effective and ideally less toxic treatment regimens, and increase rates of survival.