RESUMEN
INTRODUCTION: When a pathogenic BRCA1 or BRCA2 mutation is identified in a family, cascade genetic testing of family members is recommended since the results may inform screening or treatment decisions in men and women. However, rates of cascade testing are low, and men are considerably less likely than women to pursue cascade testing. To facilitate cascade testing in men, we designed a Web-based genetic education tool that addressed barriers to cascade testing, was individually tailored, delivered proactively, and could be used in lieu of pretest genetic counseling to streamline the cascade testing process. METHODS: We randomized 63 untested men from hereditary cancer families to Web-based genetic education (WGE) versus enhanced usual care (EUC). WGE participants were provided access to a genetic education website after which they could accept or decline genetic testing or opt for pretest genetic counseling. EUC participants received an informational brochure and a letter informing them of their eligibility for genetic testing and recommending they schedule genetic counseling. The primary outcome was the uptake of genetic testing. RESULTS: Men in the WGE group were more likely to complete genetic counseling and/or genetic testing (43% vs. 12.1%; χ2 [n = 63, df = 1] = 7.77, p = 0.005). WGE participants were also more likely to complete genetic testing compared to men in the EUC group (30% vs. 9.1%; χ2 [n = 63, df = 1] = 4.46, p = 0.03). CONCLUSION: This preliminary trial suggests that a streamlined approach to genetic testing using proactively delivered genetic education may reduce barriers to cascade testing for at-risk men, leading to increased uptake. These results should be interpreted cautiously given the select sample and high rate of non-response.
Asunto(s)
Proteína BRCA2 , Asesoramiento Genético , Pruebas Genéticas , Humanos , Masculino , Pruebas Genéticas/métodos , Femenino , Persona de Mediana Edad , Asesoramiento Genético/métodos , Adulto , Proteína BRCA2/genética , Predisposición Genética a la Enfermedad , Proteína BRCA1/genética , Neoplasias Ováricas/genética , Neoplasias Ováricas/diagnóstico , Mutación , Educación del Paciente como Asunto/métodos , Anciano , Síndrome de Cáncer de Mama y Ovario Hereditario/genética , Síndrome de Cáncer de Mama y Ovario Hereditario/diagnósticoRESUMEN
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
Telephone genetic counseling (TC) for high-risk women interested in BRCA1/2 testing has been shown to yield positive outcomes comparable to usual care (UC; in-person) genetic counseling. However, little is known about how genetic counselors perceive the delivery of these alternate forms of genetic counseling. As part of a randomized trial of TC versus UC, genetic counselors completed a 5-item genetic counselor process questionnaire (GCQ) assessing key elements of pre-test sessions (information delivery, emotional support, addressing questions and concerns, tailoring of session, and facilitation of decision-making) with the 479 female participants (TC, N = 236; UC, N = 243). The GCQ scores did not differ for TC vs. UC sessions (t (477) = 0.11, p = 0.910). However, multivariate analysis showed that participant race/ethnicity significantly predicted genetic counselor perceptions (ß = 0.172, p < 0.001) in that the GCQ scores were lower for minorities in TC and UC. Exploratory analyses suggested that GCQ scores may be associated with patient preference for UC versus TC (t (79) = 2.21, p = 0.030). Additionally, we found that genetic counselor ratings of session effectiveness were generally concordant with patient perceptions of the session. These data indicate that genetic counselors perceive that key components of TC can be delivered as effectively as UC, and that these elements may contribute to specific aspects of patient satisfaction. However, undefined process differences may be present which account for lower counselor perceptions about the effectiveness of their sessions with minority women (i.e., those other than non-Hispanic Whites). We discuss other potential clinical and research implications of our findings.
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Neoplasias de la Mama/genética , Asesoramiento Genético/métodos , Asesoramiento Genético/psicología , Neoplasias Ováricas/genética , Neoplasias de la Mama/psicología , Consejeros/psicología , Femenino , Genes BRCA1 , Genes BRCA2 , Conocimientos, Actitudes y Práctica en Salud , Humanos , Persona de Mediana Edad , Neoplasias Ováricas/psicología , Satisfacción del Paciente , Factores Socioeconómicos , TeléfonoRESUMEN
INTRODUCTION: Childhood adversity is an under-addressed dimension of primary prevention of disease in children and adults. Evidence shows racial/ethnic and socioeconomic patterning of childhood adversity in the U.S., yet data on the interaction of race/ethnicity and SES for exposure risk is limited, particularly with consideration of immigration history. This study examined racial/ethnic differences in nine adversities among children (from birth to age 17 years) in the National Survey of Child Health (2011-2012) and determined how differences vary by immigration history and income (N=84,837). METHODS: We estimated cumulative adversity and individual adversity prevalences among white, black, and Hispanic children of U.S.-born and immigrant parents. We examined whether family income mediated the relationship between race/ethnicity and exposure to adversities, and tested interactions (analyses conducted in 2014-2015). RESULTS: Across all groups, black and Hispanic children were exposed to more adversities compared with white children, and income disparities in exposure were larger than racial/ethnic disparities. For children of U.S.-born parents, these patterns of racial/ethnic and income differences were present for most individual adversities. Among children of immigrant parents, there were few racial/ethnic differences for individual adversities and income gradients were inconsistent. Among children of U.S.-born parents, the Hispanic-white disparity in exposure to adversities persisted after adjustment for income, and racial/ethnic disparities in adversity were largest among children from high-income families. CONCLUSIONS: Simultaneous consideration of multiple social statuses offers promising frameworks for fresh thinking about the distribution of disease and the design of targeted interventions to reduce preventable health disparities.
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Protección a la Infancia/etnología , Emigrantes e Inmigrantes/estadística & datos numéricos , Disparidades en el Estado de Salud , Renta/estadística & datos numéricos , Grupos Raciales , Adolescente , Niño , Preescolar , Estudios Transversales , Emigrantes e Inmigrantes/psicología , Etnicidad/estadística & datos numéricos , Femenino , Encuestas Epidemiológicas , Humanos , Lactante , Recién Nacido , Masculino , Prevalencia , Factores de Riesgo , Estados UnidosRESUMEN
BACKGROUND: Insured adults receive invasive cardiovascular procedures more frequently than uninsured adults. We examined the impact of healthcare reform in Massachusetts on use of coronary revascularization procedures and in-hospital and 1-year mortality by race/ethnicity, education, and sex. METHODS AND RESULTS: Using hospital claims data, we compared differences in coronary revascularization rates (coronary artery bypass grafting or percutaneous coronary intervention) and in-hospital mortality by race/ethnicity, education, and sex among Massachusetts residents aged 21 to 64 years hospitalized with a principal discharge diagnosis of ischemic heart disease before (November 1, 2004, to July 31, 2006) and after (December 1, 2006, to September 30, 2008) reform; 1-year mortality was calculated for those undergoing revascularization. Adjusted logistic regression assessed 24 216 discharges before reform and 20 721 discharges after reform. Blacks had 30% lower odds of receiving coronary revascularization than whites in the prereform period. Compared with whites in the postreform period, blacks (odds ratio=0.73; 95% confidence interval, 0.63-0.84) and Hispanics (odds ratio= 0.84; 95% confidence interval, 0.74-0.97) were less likely and Asians (odds ratio=1.29; 95% confidence interval, 1.01-1.65) were more likely to receive coronary revascularization. Patients living in more educated communities, men, and persons with private insurance were more likely to receive coronary revascularization before and after reform. Compared with the prereform period, the adjusted odds of in-hospital mortality were higher in patients living in less-educated communities in the postreform period. No differences in 1-year mortality by race/ethnicity, education, or sex for revascularized patients were observed before or after reform. CONCLUSIONS: Reducing insurance barriers to receipt of coronary revascularization procedures has not yet eliminated preexisting demographic and educational disparities in access to these procedures.