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PURPOSE: Women with greater than 20-25% lifetime breast cancer risk are recommended to have breast cancer screening with annual mammogram and supplemental breast MRI. However, few women follow these screening recommendations. The objective of this study was to identify barriers and facilitators of screening among women at high risk for breast cancer, guided by the Health Services Utilization Model (HSUM). METHODS: Unaffected high-risk women (N=63) completed semi-structured qualitative interviews exploring their experiences with breast cancer screening. Interviews were audio recorded, transcribed verbatim, and analyzed using a combined deductive and inductive approach. RESULTS: Most participants (84%) had received a screening mammogram; fewer (33%) had received a screening breast MRI. Only 14% had received neither screening. In line with the HSUM, qualitative analysis identified predisposing factors, enabling factors, and need factors associated with receipt of breast cancer screening. Enabling factors - including financial burden, logistic barriers, social support, and care coordination - were most frequently discussed. Predisposing factors included knowledge, health beliefs, and self-advocacy. Need factors included healthcare provider recommendation, family history of breast cancer, and personal medical history. Although HSUM themes were consistent for both mammography and breast MRI, participants did highlight several important differences in barriers and facilitators between the two screening modalities. CONCLUSION: Barriers and enabling factors associated with supplemental screening for high-risk women represent possible intervention targets. Future research is needed to develop and test multilevel interventions targeting these factors, with the ultimate goal of increasing access to supplemental screening for high-risk women.
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Recent treatment advances have resulted in significantly increased survival times following metastatic breast cancer (MBC) diagnosis. Novel treatment approaches-and their related side effects-have changed the landscape of MBC treatment decision-making. We developed a prototype of an online educational tool to prepare patients with MBC for shared decision-making with their oncologists. We describe the five phases of tool development: (1) in-depth, semi-structured qualitative interviews and (2) feedback on storyboards of initial content with patients with MBC and oncology providers. This was followed by three phases of iterative feedback with patients in which they responded to (3) initial, non-navigable website content and (4) a beta version of the full website. In the final phase (5), patients newly diagnosed with MBC (N = 6) used the website prototype for 1 week and completed surveys assessing acceptability, feasibility, treatment knowledge, preparation for decision-making, and self-efficacy for decision-making. Participants in Phase 1 characterized a cyclical process of MBC treatment decision-making and identified key information needs. Website content and structure was iteratively developed in Phases 2-4. Most participants in Phase 5 (n = 4) accessed the website 2-5 times. All participants who accessed the website at least once (n = 5) felt they learned new information from the website prototype and would recommend it to others newly-diagnosed with MBC. After using the website prototype, participants reported high preparation and self-efficacy for decision-making. This multiphase, iterative process resulted in a prototype intervention designed to support decision-making for MBC patients.
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INTRODUCTION: The Achieving Cancer Equity through Identification, Testing, and Screening (ACE-ITS) program is a community-engaged framework to improve mammography maintenance and rates of genetic risk assessment, counseling, and testing using a multilevel approach that enhances patient navigation through mobile health and community education. METHODS: The ACE-ITS program is based on the National Institute of Minority Health and Health Disparities research framework focused on the individual (genetic testing, screening navigation) and community (community-based breast health education) levels and targeted to the biological- (genetic risk), behavioral- (mammography screening), sociocultural- (underserved Black and Hispanic women), and the health care system (patient navigation, automated text messages)-related domains. We further integrate the Practical Robust Implementation and Sustainability Model to describe our program implementation. RESULTS: In collaboration with genetic counselors and community partners, we created educational modules on mammography maintenance and genetic counseling/testing that have been incorporated into the navigator-led community education sessions. We also implemented a universal genetic risk assessment tool and automated text message reminders for repeat mammograms into our mammography navigation workflow. Through the ACE-ITS program implementation, we have collaboratively conducted 22 educational sessions and navigated 585 women to mammography screening over the 2020-2021 calendar years. From January to December 2021, we have also conducted genetic risk assessment on 292 women, of whom 7 have received genetic counseling/testing. CONCLUSIONS: We describe a multilevel, community-engaged quality improvement program designed to reduce screening-related disparities in Black and Hispanic women in our catchment area.
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Detección Precoz del Cáncer , Neoplasias , Femenino , Humanos , Academias e Institutos , Población Negra , Asesoramiento Genético , Neoplasias/diagnóstico , Neoplasias/genética , Proyectos Piloto , Equidad en Salud , Poblaciones Vulnerables , Hispánicos o Latinos , Área sin Atención MédicaRESUMEN
BACKGROUND: Annual screening breast MRI is recommended for women at high (≥ 20% lifetime) breast cancer risk, but is underutilized. Guided by the Health Services Utilization Model (HSUM), we assessed factors associated with screening breast MRI among high-risk women. METHODS: From August 2020-January 2021, we recruited an online convenience sample of high-risk women ages 25-85 (N = 232). High-risk was defined as: pathogenic genetic mutation in self or first-degree relative; history of lobular carcinoma in situ; history of thoracic radiation; or estimated lifetime risk ≥ 20%. Participants self-reported predisposing factors (breast cancer knowledge, health locus of control), enabling factors (health insurance type, social support), need factors (perceived risk, screening-supportive social norms, provider recommendation), and prior receipt of screening breast MRI. Multivariable logistic regression analysis with backward selection identified HSUM factors associated with receipt of screening breast MRI. RESULTS: About half (51%) of participants had received a provider recommendation for screening breast MRI; only 32% had ever received a breast MRI. Breast cancer knowledge (OR = 1.15, 95% CI = 1.04-1.27) and screening-supportive social norms (OR = 2.21, 95% CI = 1.64-2.97) were positively related to breast MRI receipt. No other HSUM variables were associated with breast MRI receipt (all p's > 0.1). CONCLUSIONS: High-risk women reported low uptake of screening breast MRI, indicating a gap in guideline-concordant care. Breast cancer knowledge and screening-supportive social norms are two key areas to target in future interventions. Data were collected during the COVID-19 pandemic and generalizability of results is unclear. Future studies with larger, more heterogeneous samples are needed to replicate these findings.
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Neoplasias de la Mama , COVID-19 , Femenino , Humanos , Detección Precoz del Cáncer , Neoplasias de la Mama/diagnóstico por imagen , Neoplasias de la Mama/epidemiología , Autoinforme , Pandemias , Imagen por Resonancia MagnéticaRESUMEN
PURPOSE: Personal aversion to scientific uncertainty may influence how women perceive the benefits of mammography, a breast cancer screening practice with conflicting scientific opinions and guidelines. Such associations may even exist among women who participate in screening. METHODS: We evaluated the distribution of aversion to ambiguous medical information (AA-Med), using a 6-item scale capturing the level of agreement with statements about obtaining a cancer screening test with conflicting medical recommendations in 665 women (aged 40-60 years; 79.5% Hispanic) recruited during screening mammography appointments in New York City. We assessed the association of AA-Med with perceptions of benefits of mammography (breast cancer mortality reduction, worry reduction, early detection, treatment improvement) using multivariable logistic regression. RESULTS: Over a quarter of participants expressed negative reactions to medical ambiguity about a cancer screening test (e.g., fear, lower trust in experts), but a majority endorsed intention to undergo screening. AA-Med was higher in women who were U.S.-born, non-Hispanic black, and had marginal to adequate health literacy, but there were no differences by clinical factors or screening experiences (e.g., family history, prior breast biopsy). Women with higher AA-Med were more likely to perceive treatment benefits from mammography (OR = 1.37, 95% CI = 0.99-1.90), but AA-Med was not associated with other perceived mammography benefits. CONCLUSIONS: Aversion to uncertainty regarding cancer screening varies by sociodemographic characteristics but has limited associations with perceived mammography benefits in women who already participate in screening.
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Neoplasias de la Mama , Femenino , Humanos , Neoplasias de la Mama/diagnóstico por imagen , Neoplasias de la Mama/prevención & control , Mamografía , Incertidumbre , Detección Precoz del Cáncer , Mama , Tamizaje MasivoRESUMEN
The purpose of this study is to evaluate the direct and indirect effects of a web-based, Protection Motivation Theory (PMT)-informed breast cancer education and decision support tool on intentions for risk-reducing medication and breast MRI among high-risk women. Women with ≥ 1.67% 5-year breast cancer risk (N = 995) were randomized to (1) control or (2) the PMT-informed intervention. Six weeks post-intervention, 924 (93% retention) self-reported PMT constructs and behavioral intentions. Bootstrapped mediations evaluated the direct effect of the intervention on behavioral intentions and the mediating role of PMT constructs. There was no direct intervention effect on intentions for risk-reducing medication or MRI (p's ≥ 0.12). There were significant indirect effects on risk-reducing medication intentions via perceived risk, self-efficacy, and response efficacy, and on MRI intentions via perceived risk and response efficacy (p's ≤ 0.04). The PMT-informed intervention effected behavioral intentions via perceived breast cancer risk, self-efficacy, and response efficacy. Future research should extend these findings from intentions to behavior. ClinicalTrials.gov Identifier: NCT03029286 (date of registration: January 24, 2017).
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Neoplasias de la Mama , Educación en Salud , Intención , Intervención basada en la Internet , Femenino , Humanos , Neoplasias de la Mama/diagnóstico por imagen , Neoplasias de la Mama/tratamiento farmacológico , Educación en Salud/métodos , Motivación , Encuestas y Cuestionarios , Teoría Psicológica , Imagen por Resonancia Magnética/psicología , Medición de Riesgo , Resultado del TratamientoRESUMEN
PURPOSE: Most studies of adherence to treatment for breast cancer have focused on early-stage patients. Findings from these studies may not generalize to patients with metastatic breast cancer (MBC). The objective of this study was to identify barriers and facilitators of adherence to cyclin-dependent kinase 4/6 (CDK4/6) inhibitors among patients with MBC, guided by the social ecologic model (SEM). METHODS: Patients with MBC (N = 25), their caregivers (N = 9), and oncology providers (N = 13) completed semi-structured qualitative interviews exploring their experiences with CDK4/6 inhibitors. Interviews were audio-recorded, transcribed verbatim, and analyzed by three raters using a combined deductive and inductive approach. RESULTS: Qualitative analysis identified barriers and facilitators of adherence at each SEM level. Intrapersonal and interpersonal factors were most frequently discussed. Intrapersonal factors included knowledge/beliefs about CDK4/6 inhibitors, side effects, and establishing a routine. Interpersonal factors included effective communication with/coordination by the care team, support from family and friends, and information from other patients with MBC. Although less frequently discussed, policy factors (i.e., cost of CDK4/6 inhibitors) were of great concern to patients, caregivers, and providers. CONCLUSION: Barriers to adherence to CDK4/6 inhibitors exist at multiple levels. Our results underscore the potential value of a multilevel intervention (e.g., patient education, evidence-based strategies for symptom management, tips for open and assertive communication with providers, information about financial resources/support available, and so on) to support adherence in this population.
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Neoplasias de la Mama , Quinasa 6 Dependiente de la Ciclina/metabolismo , Neoplasias de la Mama/tratamiento farmacológico , Neoplasias de la Mama/patología , Cuidadores , Quinasa 4 Dependiente de la Ciclina , Femenino , Humanos , Investigación CualitativaRESUMEN
OBJECTIVE: As germline genetic referral becomes increasingly routine as part of the care of newly diagnosed breast cancer patients, it is important to understand the psychosocial impact of genetic counseling at the time of diagnosis. We examined the psychosocial and quality of life (QOL) impact of providing proactive rapid genetic counseling and testing (RGCT) in the immediate aftermath of a breast cancer diagnosis. METHODS: We randomized 330 patients in a 2:1 ratio to proactive rapid genetic counseling (RGCT; N = 222) versus usual care (UC; N = 108). Participants completed a baseline telephone survey before randomization and definitive surgery and a follow-up survey at 1-month post-randomization. We evaluated the impact of RGCT versus UC on breast cancer genetic knowledge, distress, QOL, and decisional conflict. Given that 43% of UC participants and 86% of RGCT participants completed genetic counseling prior to the 1-month assessment, we also evaluated the impact of genetic counseling participation over and above group assignment. RESULTS: The RGCT intervention led to increased breast cancer genetic knowledge relative to UC but did not differentially impact other study outcomes. Across groups patients who participated in genetic counseling had significantly increased knowledge and improved QOL compared to those who did not participate in genetic counseling. CONCLUSIONS: While prior research has documented the impact of genetic counseling and testing on surgical decisions, these results confirm that participation in genetic counseling at the time of diagnosis can yield improvements in knowledge and QOL in the short-term.
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Neoplasias de la Mama , Asesoramiento Genético , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/genética , Neoplasias de la Mama/cirugía , Consejo , Femenino , Asesoramiento Genético/psicología , Pruebas Genéticas , Humanos , Calidad de Vida , Derivación y ConsultaRESUMEN
Women at high risk for breast cancer (BC) may consider chemoprevention for risk reduction, but uptake is low. This study examined the role of affect regulation (the attempt to alter or control one's emotions) in decision-making about BC chemoprevention. A cross-sectional, single group design was used. High-risk women (N = 81) were surveyed. Moderation analyses specified cancer-specific distress as the independent variable, affect regulation (cognitive reappraisal or expressive suppression) as the moderator, and chemoprevention intentions (yes = 1, unsure = 0, no = -1) as the dependent variable. Cognitive reappraisal significantly moderated the relationship between cancer-specific distress and chemoprevention intentions (p = 0.03), but expressive suppression did not (p = 0.31). For the 44% of participants who were highest on reappraisal, higher cancer-specific distress was associated with greater intentions for chemoprevention. For the remaining 56%, there was no relationship between cancer-specific distress and chemoprevention intentions. Cognitive reappraisal may play an important role in decisions regarding uptake of chemoprevention.
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Neoplasias de la Mama , Neoplasias de la Mama/prevención & control , Neoplasias de la Mama/psicología , Quimioprevención/psicología , Estudios Transversales , Emociones , Femenino , Humanos , IntenciónRESUMEN
Breast density notification laws have been adopted in the absence of consistent guidelines for post-notification follow-up. This can lead to inconsistent and potentially deficient management of women's health due to inconsistent physician practices. We examined physicians' knowledge and practices regarding follow-up for patients who receive density notifications. Physicians who referred patients to a Michigan hospital network for screening mammograms were recruited to participate in survey study; 105 (29.8%) responded. The survey assessed physicians' demographics, knowledge, and awareness of breast density and breast cancer risk and of density notification laws, and perceptions of appropriate follow-up behaviors for their patients who received density notifications. Most physicians (75%) knew about the notification law, and they were generally comfortable responding to breast density questions and deciding on follow-up. Most indicated that additional breast imaging (68.0%), followed by assessing breast cancer risk (24.7%) were appropriate follow-up responses. Physicians who performed breast cancer risk assessments, and who were more comfortable with breast density questions and follow-up decision making, were more likely to propose additional imaging. Male physicians were less likely to propose assessing breast cancer risk, and less likely to propose clinical and/or breast self-examinations. Divergence between practice and guidelines when it comes to supplemental breast cancer screening, coupled with density notification language that promotes additional screening in the absence of consistent evidence, remains concerning. Improved understanding of how density notification recipients and their physicians make decisions about supplemental screening is warranted to ensure that breast cancer risk is properly considered.
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Neoplasias de la Mama , Médicos , Densidad de la Mama , Neoplasias de la Mama/diagnóstico por imagen , Detección Precoz del Cáncer , Femenino , Estudios de Seguimiento , Humanos , Masculino , Mamografía , PercepciónRESUMEN
Risk assessment in cancer genetic counseling is essential in identifying individuals at high risk for developing breast cancer to recommend appropriate screening and management options. Historically, many breast cancer risk prediction models were developed to calculate an individual's risk to develop breast cancer or to carry a pathogenic variant in the BRCA1 or BRCA2 genes. However, how or when genetic counselors use these models in clinical settings is currently unknown. We explored genetic counselors' breast cancer risk model usage patterns including frequency of use, reasons for using or not using models, and change in usage since the adoption of multi-gene panel testing. An online survey was developed and sent to members of the National Society of Genetic Counselors; board-certified genetic counselors whose practice included cancer genetic counseling were eligible to participate in the study. The response rate was estimated at 23% (243/1,058), and respondents were predominantly working in the United States. The results showed that 93% of all respondents use at least one breast cancer risk prediction model in their clinical practice. Among the six risk models selected for the study, the Tyrer-Cuzick (IBIS) model was used most frequently (95%), and the BOADICEA model was used least (40%). Determining increased or decreased surveillance and breast MRI eligibility were the two most common reasons for most model usage, while time consumption and difficulty in navigation were the two most common reasons for not using models. This study provides insight into perceived benefits and limitations of risk models in clinical use in the United States, which may be useful information for software developers, genetic counseling program curriculum developers, and currently practicing cancer genetic counselors.
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Neoplasias de la Mama , Consejeros , Neoplasias de la Mama/diagnóstico , Consejo , Consejeros/psicología , Femenino , Genes BRCA2 , Asesoramiento Genético/psicología , Pruebas Genéticas , Humanos , Estados UnidosRESUMEN
Consensus and evidence suggest that cascade testing is critical to achieve the promise of cancer genetic testing. However, barriers to cascade testing include effective family communication of genetic risk information and family members' ability to cope with genetic risk. These barriers are further complicated by the developmental needs of unaffected family members during critical windows for family communication and adaptation. Peer support could address these barriers. We provide two illustrative examples of ongoing BRCA1/2-related clinical trials that apply a peer support model to improve family communication and functioning. Peer support can augment currently available genetic services to facilitate adjustment to and effective use of cancer genetic risk information. Importantly, this scalable approach can address the presence of cancer risk within families across multiple developmental stages. This applies a family-centered perspective that accommodates all potentially at-risk relatives. This peer support model can be further applied to emerging topics in clinical genetics to expand reach and impact.
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Cascade testing for hereditary breast/ovarian cancer is an important public health priority. Increasing attention has been paid to the relevance of testing for men within BRCA1/2-positive families given that such testing may provide important information about their cancer risks, particularly for prostate cancer, and risks to their offspring. However, men are much less likely to seek genetic counseling and testing than their at-risk female relatives. To facilitate access to pre-test information and testing, we developed a web-based intervention (WI) for men that we are evaluating in a pilot randomized controlled trial (RCT). This paper describes three phases of research in the development of the WI: (1) formative (qualitative) research among men from BRCA1/2 families to assess needs and preferences for education; (2) a detailed description of the organization, format, and content of the WI; and (3) usability testing. We discuss the aims and hypotheses of the pilot RCT in which the WI is being compared with an enhanced usual care condition among at-risk men. We expect that the WI described here will foster informed decisions and lead to increased use of BRCA1/2 counseling and testing, potentially yielding improved cancer control outcomes for this understudied group, and for their at-risk relatives.
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Neoplasias de la Mama , Neoplasias Ováricas , Proteína BRCA1/genética , Neoplasias de la Mama/genética , Femenino , Asesoramiento Genético , Predisposición Genética a la Enfermedad , Pruebas Genéticas , Humanos , Internet , Masculino , Mutación , Neoplasias Ováricas/genéticaRESUMEN
BACKGROUND: Breast density is an important breast cancer risk factor and a focus of recent national and state health policy efforts. This article describes breast density awareness, knowledge, and communication among participants in a health system-embedded trial with clinically elevated breast cancer risk 1 year before state-mandated density disclosure. METHODS: Trial participants' demographics and prior health history were ascertained from electronic health records. The proportions of women reporting prior breast density awareness, knowledge of density's masking effect, and communication with a provider about their own breast density were calculated using baseline interview data collected from 2017 to 2018. Multiple logistic regression was used to estimate associations between women's characteristics and density awareness, knowledge, and communication. RESULTS: Although the overwhelming majority of participants had heard of breast density (91%) and were aware of breast density's masking effect (87%), only 60% had ever discussed their breast density with a provider. Annual mammography screening was associated with prior breast density awareness (odds ratio [OR], 2.97; 95% confidence interval [CI], 1.29-6.81), knowledge (OR, 2.83; 95% CI, 1.20-6.66), and communication (OR, 2.87; 95% CI, 1.34-6.16) compared with an infrequent or unknown screening interval. Receipt of breast biopsy was also associated with prior knowledge (OR, 1.60; 95% CI, 1.04-2.45) and communication (OR, 1.36; 95% CI, 1.00-1.85). CONCLUSIONS: Breast density awareness and knowledge are high among insured women participating in clinical research, even in the absence of mandated density disclosure. Patient-provider communication about personal density status is less common, particularly among women with fewer interactions with breast health specialists.
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Concienciación , Densidad de la Mama/fisiología , Mama/patología , Comunicación , Atención a la Salud/estadística & datos numéricos , Conocimientos, Actitudes y Práctica en Salud , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/psicología , Detección Precoz del Cáncer/psicología , Femenino , Humanos , Mamografía/psicología , Tamizaje Masivo/psicología , Persona de Mediana EdadRESUMEN
PURPOSE: Recent trends indicate increased use of contralateral prophylactic mastectomy (CPM) among newly diagnosed breast cancer patients, particularly those who test positive for a pathogenic variant in the BRCA1/2 genes. However, the rate of CPM among patients who test negative or choose not to be tested is surprisingly high. We aimed to identify patient predictors of CPM following breast cancer diagnosis among such patients. METHODS: As part of a randomized controlled trial of rapid genetic counseling and testing vs. usual care, breast cancer patients completed a baseline survey within 6 weeks of diagnosis and before definitive surgery. Analyses focused on patients who opted against testing (n = 136) or who received negative BRCA1/2 test results (n = 149). We used multivariable logistic regression to assess the associations between sociodemographic, clinical- and patient-reported factors with use of CPM. RESULTS: Among patients who were untested or who received negative test results, having discussed CPM with one's surgeon at the time of diagnosis predicted subsequent CPM. Patients who were not candidates for breast-conserving surgery and those with higher levels of cancer-specific intrusive thoughts were also more likely to obtain a CPM. CONCLUSION: The strongest predictors of CPM in this population were objective clinical factors and discussion with providers. However, baseline psychosocial factors were also independently related to the receipt of CPM. Thus, although CPM decisions are largely guided by relevant clinical factors, it is important to attend to psychosocial factors when counseling newly diagnosed breast cancer patients about treatment options.
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Neoplasias de la Mama/cirugía , Mastectomía Profiláctica , Adulto , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/genética , Toma de Decisiones Clínicas , Terapia Combinada , Manejo de la Enfermedad , Femenino , Genes BRCA1 , Genes BRCA2 , Asesoramiento Genético , Predisposición Genética a la Enfermedad , Pruebas Genéticas , Humanos , Persona de Mediana Edad , Estudios Multicéntricos como Asunto , Estadificación de Neoplasias , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Resultado del TratamientoRESUMEN
BACKGROUND AND OBJECTIVES: Many newly diagnosed breast cancer patients do not receive genetic counseling and testing at the time of diagnosis. We examined predictors of genetic testing (GT) in this population. METHODS: Within a randomized controlled trial of proactive rapid genetic counseling and testing vs usual care, patients completed a baseline survey within 6 weeks of breast cancer diagnosis but before a definitive survey. We conducted a multinomial logistic regression to identify predictors of GT timing/uptake. RESULTS: Having discussed GT with a surgeon was a dominant predictor (χ2 (2, N = 320) = 70.13; P < .0001). Among those who discussed GT with a surgeon, patients who had made a final surgery decision were less likely to receive GT before surgery compared with postsurgically (OR [odds ratio] = 0.24; 95% confidence interval [CI] = 0.12-0.49) or no testing (OR = 0.28; 95% CI = 0.14-0.56). Older patients (OR = 0.95; 95% CI = 0.91-0.99) and participants enrolled in New York/New Jersey (OR = 0.22; 95% CI = 0.07-0.72) were less likely to be tested compared with receiving results before surgery. Those with higher perceived risk (OR = 1.02; 95% CI = 1.00-1.03) were more likely to receive results before surgery than to not be tested. CONCLUSIONS: This study highlights the role of patient-physician communication about GT as well as patient-level factors that predict presurgical GT.
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Neoplasias de la Mama/genética , Pruebas Genéticas/estadística & datos numéricos , Adulto , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/cirugía , Toma de Decisiones , Femenino , Asesoramiento Genético/estadística & datos numéricos , Humanos , Modelos Logísticos , Mid-Atlantic Region/epidemiología , Persona de Mediana Edad , Ensayos Clínicos Controlados Aleatorios como Asunto , Encuestas y CuestionariosRESUMEN
PURPOSE: Little is known about whether gene expression profile (GEP) testing and specific recurrence scores (e.g., medium risk) improve women's confidence in their chemotherapy decision or perceived recurrence risk. We evaluate the relationship between these outcomes and GEP testing. METHODS: We surveyed women eligible for GEP testing (stage I or II, Gr1-2, ER+, HER2-) identified through the Surveillance, Epidemiology, and End Results (SEER) Registry of Washington or Kaiser Permanente Northern California from 2012 to 2016, approximately 0-4 years from diagnosis (N = 904, RR = 45.4%). Confidence in chemotherapy was measured as confident (Very, completely) versus Not Confident (Somewhat, A little, Not At All); perceived risk recurrence was recorded numerically (0-100%). Women reported their GEP test receipt (Yes, No, Unknown) and risk recurrence score (High, Intermediate, Low, Unknown). In our analytic sample (N = 833), we propensity score weighted the three test receipt cohorts and used propensity weighted multivariable regressions to examine associations between the outcomes and the three test receipt cohorts, with receipt stratified by score. RESULTS: 29.5% reported an unknown GEP test receipt; 86% being confident. Compared to no test receipt, an intermediate score (aOR 0.34; 95% CI 0.20-0.58), unknown score (aOR 0.09; 95% CI 0.05-0.18), and unknown test receipt (aOR 0.37; 95% CI 0.24-0.57) were less likely to report confidence. Most women greatly overestimated their recurrence risk regardless of their test receipt or score. CONCLUSIONS: GEP testing was not associated with greater confidence in chemotherapy decisions. Better communication about GEP testing and the implications for recurrence risk may improve women's decisional confidence.
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Neoplasias de la Mama/patología , Toma de Decisiones Clínicas , Perfilación de la Expresión Génica , Recurrencia Local de Neoplasia/diagnóstico , Participación del Paciente/psicología , Adulto , Anciano , Mama/patología , Mama/cirugía , Neoplasias de la Mama/epidemiología , Neoplasias de la Mama/terapia , Supervivientes de Cáncer/estadística & datos numéricos , Quimioterapia Adyuvante/psicología , Quimioterapia Adyuvante/estadística & datos numéricos , Femenino , Humanos , Mastectomía , Persona de Mediana Edad , Recurrencia Local de Neoplasia/epidemiología , Recurrencia Local de Neoplasia/prevención & control , Participación del Paciente/estadística & datos numéricos , Pronóstico , Puntaje de Propensión , Programa de VERF/estadística & datos numéricos , Autoinforme/estadística & datos numéricosRESUMEN
The prenatal genetic counseling process may be influenced by the patient's insurance coverage for both prenatal testing and termination. Major commercial insurance providers have different policies. TRICARE is the United States Department of Defense health program for uniformed service members. TRICARE provides coverage to approximately 9.4 million beneficiaries, including health plans, special programs, prescriptions, and dental plans. TRICARE's covered medical expenses are outlined in their policies, including those pertaining to genetic testing and termination. This qualitative study aimed to explore the extent to which insurance coverage of prenatal genetic testing and termination of pregnancy affect the genetic counseling process by exploring genetic counselors' experience with TRICARE. The majority of counselors stated that they did not change their overall counseling process for TRICARE patients. However, several counselors expressed that they changed the way they discussed cost with TRICARE patients, specifically in regard to genetic testing. Additionally, counselors provided their perceptions of their patients' emotional experiences. With the recent consolidation of the three TRICARE regions into two TRICARE Regional Office (TRO) regions and the renewal of the Laboratory Developed Tests Demonstration Project, the findings of this study are valuable in the evaluation of TRICARE's coverage of prenatal genetic services.
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Consejeros , Asesoramiento Genético/provisión & distribución , Cobertura del Seguro , Salud Militar/economía , Diagnóstico Prenatal , Práctica Profesional , Aborto Eugénico/economía , Aborto Eugénico/estadística & datos numéricos , Consejeros/psicología , Consejeros/estadística & datos numéricos , Consejeros/provisión & distribución , Femenino , Frustación , Asesoramiento Genético/economía , Asesoramiento Genético/estadística & datos numéricos , Pruebas Genéticas/economía , Pruebas Genéticas/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/economía , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Humanos , Cobertura del Seguro/economía , Cobertura del Seguro/estadística & datos numéricos , Entrevistas como Asunto , Salud Militar/estadística & datos numéricos , Personal Militar/estadística & datos numéricos , Embarazo , Diagnóstico Prenatal/economía , Diagnóstico Prenatal/estadística & datos numéricos , Práctica Profesional/normas , Práctica Profesional/estadística & datos numéricos , Derivación y Consulta/economía , Derivación y Consulta/estadística & datos numéricos , Encuestas y Cuestionarios , Estados Unidos/epidemiología , United States Department of Defense/economíaRESUMEN
The diagnostic and predictive information produced by genomic sequencing may impact medical management, and it is critical that providers and institutions are able to use this information appropriately for patient care. Guided by the patient-centered care model, we investigated provider perspectives of patient, provider, and system-level factors that could influence the implementation of genomic medicine within the integrated healthcare system of the US Department of Defense (DOD). The purpose of this study was to explore patient-centered care elements related to the application of genomic sequencing in a military healthcare facility to understand the current capability and key gaps for patient-centered genomic medicine. Twenty DOD healthcare providers were interviewed regarding their past experiences and future expectations of genetics and genomics. These semi-structured interviews were recorded, transcribed and analyzed. All providers interviewed had some experience with genetics, but the level of experience varied greatly. Providers reported widely differing degrees of knowledge and confidence regarding genetics and about military-specific policies regarding genetics which varied by specialty. In addition, most providers stated that their department did not currently have the infrastructure to allow for the care of patients with secondary genetic findings, defined as genetic findings which are intentionally examined because of their importance to healthcare management, but are unrelated to the reason the individual underwent sequencing. This study reveals gaps in key elements of patient-centered care related to genomic medicine that may be helpful to address in future implementation efforts.