RESUMEN
Objective: The debate over use of race as a proxy for genetic risk of disease continues, but little is known about how primary care providers (nurse practitioners and general internal medicine physicians) currently use race in their clinical practice. Our study investigates primary care providers' use of race in clinical practice. Methods: Survey data from three cross-sectional parent studies were used. A total of 178 nurse practitioners (NPs) and 759 general internal medicine physicians were included. The outcome of interest was the Racial Attributes in Clinical Evaluation (RACE) scale, which measures explicit use of race in clinical decision-making. Predictor variables included the Genetic Variation Knowledge Assessment Index (GKAI), which measures the providers' knowledge of human genetic variation. Results: In the final multivariable model, NPs had an average RACE score that was 1.60 points higher than the physicians' score (P=.03). The GKAI score was not significantly associated with the RACE outcome in the final model (P=.67). Conclusions: Physicians had more knowledge of genetic variation and used patients' race less in the clinical decision-making process than NPs. We speculate that these differences may be related to differences in discipline-specific clinical training and approaches to clinical care. Further exploration of these differences is needed, including examination of physicians' and NPs' beliefs about race, how they use race in disease screening and treatment, and if the use of race is contributing to health care disparities.
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Toma de Decisiones Clínicas , Disparidades en Atención de Salud , Enfermeras Practicantes/ética , Médicos/ética , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To provide expert personal perspectives of genomic health care and what is needed for nursing to prepare for today as well as for the future. DATA SOURCES: Personal interviews and published literature. CONCLUSION: A future that includes genomic information as part of health care is exciting, enlightening, and challenging. Nurses must maintain a holistic vision for implementing genomic health care today and tomorrow. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses have opportunities to integrate genomic information within their practice, education, and research to improve patient outcomes.
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Genoma Humano , Neoplasias/genética , Neoplasias/enfermería , Humanos , Enfermería OncológicaRESUMEN
PURPOSE: To examine nurses' self-reported use of race in clinical evaluation. DESIGN: This cross-sectional study analyzed data collected from three separate studies using the Genetics and Genomics in Nursing Practice Survey, which includes items about use of race and genomic information in nursing practice. The Racial Attributes in Clinical Evaluation (RACE) scale was used to measure explicit clinical use of race among nurses from across the United States. METHODS: Multivariate regression analysis was used to examine associations between RACE score and individual-level characteristics and beliefs in 5,733 registered nurses. FINDINGS: Analysis revealed significant relationships between RACE score and nurses' race and ethnicity, educational level, and views on the clinical importance of patient demographic characteristics. Asian nurses reported RACE scores 1.41 points higher than White nurses (p < .001), and Black nurses reported RACE scores 0.55 points higher than White nurses (p < .05). Compared to diploma-level nurses, the baccalaureate-level nurses reported 0.69 points higher RACE scores (p < .05), master's-level nurses reported 1.63 points higher RACE scores (p < .001), and doctorate-level nurses reported 1.77 points higher RACE scores (p < .01). In terms of clinical importance of patient characteristics, patient race and ethnicity corresponded to a 0.54-point increase in RACE score (p < .001), patient genes to a 0.21-point increase in RACE score (p < .001), patient family history to a 0.15-point increase in RACE score (p < .01), and patient age to a 0.19-point increase in RACE score (p < .001). CONCLUSIONS: Higher reported use of race among minority nurses may be due, in part, to differential levels of racial self-awareness. A relatively linear positive relationship between level of nursing degree nursing education and use of race suggests that a stronger foundation of knowledge about genetic ancestry, population genetics and the concept "race" and genetic ancestry may increase in clinical decision making could allow nurses to more appropriately use of race in clinical care. Integrating patient demographic characteristics into clinical decisions is an important component of nursing practice. CLINICAL RELEVANCE: Registered nurses provide care for diverse racial and ethnic patient populations and stand on the front line of clinical care, making them essential for reducing racial and ethnic disparities in healthcare delivery. Exploring registered nurses' individual-level characteristics and clinical use of race may provide a more comprehensive understanding of specific training needs and inform nursing education and practice.
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Toma de Decisiones Clínicas , Enfermeras y Enfermeros/psicología , Pautas de la Práctica en Enfermería/estadística & datos numéricos , Grupos Raciales/estadística & datos numéricos , Adulto , Estudios Transversales , Encuestas de Atención de la Salud , Disparidades en Atención de Salud , Humanos , Persona de Mediana Edad , Enfermeras y Enfermeros/estadística & datos numéricos , Investigación en Evaluación de Enfermería , Estados UnidosRESUMEN
Genomic discoveries will increasingly advance the science of medicine. Limited genomic literacy may adversely impact the public's understanding and use of the power of genetics and genomics in health care and public health. In November 2011, a meeting was held by the National Human Genome Research Institute to examine the challenge of achieving genomic literacy for the general public, from kindergarten to grade 12 to adult education. The role of the media in disseminating scientific messages and in perpetuating or reducing misconceptions was also discussed. Workshop participants agreed that genomic literacy will be achieved only through active engagement between genomics experts and the varied constituencies that comprise the public. This report summarizes the background, content, and outcomes from this meeting, including recommendations for a research agenda to inform decisions about how to advance genomic literacy in our society.
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Medios de Comunicación , Genómica/educación , Alfabetización en Salud , Atención a la Salud , Investigación Genética , Genoma Humano , Conocimientos, Actitudes y Práctica en Salud , Humanos , National Human Genome Research Institute (U.S.) , Salud Pública , Investigación , Instituciones Académicas , Estados UnidosRESUMEN
Genomics is an emerging field with newly developed expectations for all healthcare professionals. Nursing faculty are critical to preparing the future nursing workforce in genomics but faculty knowledge, receptivity, and interest in learning more about this subject were unknown. The authors discuss the process used to assess nursing faculty's readiness to change as a way to substantiate the need for faculty training.
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Competencia Clínica , Curriculum , Educación en Enfermería , Docentes de Enfermería , Genómica/educación , Enseñanza/métodos , Evaluación Educacional , Escolaridad , Testimonio de Experto , Conocimientos, Actitudes y Práctica en Salud , Humanos , Liderazgo , Aprendizaje , Modelos de Enfermería , Modelos Teóricos , Investigación en Evaluación de Enfermería , Estados UnidosRESUMEN
PURPOSE: The provision of genetic services often occurs in a cascading fashion within families experiencing inherited diseases. This study examines whether previous family experiences with genetic services influences levels of psychological well-being of family members receiving services later. METHODS: Two hundred ninety-seven persons from 38 families with Lynch syndrome completed questionnaires before receiving genetic services. Baseline levels of test-related distress, depressive symptoms, and cancer worries were assessed in relationship to the (1) amount of time elapsed since services were provided to the index case and (2) generation of the family member relative to the index case. RESULTS: Family members in the same generation as the index case experienced significant increases in test-related distress (P = 0.003) and cancer worry (P = 0.001) with increasing time between receipt of genetic test results by the index case and provision of services to family members. Change in the number of depressive symptoms was not significant (P = 0.17). CONCLUSION: The provision of genetic services through a cascading approach significantly increases distress and worry among family members within the same generation as the index case who receive services at increasingly distant time intervals. Additional research is needed to explore social influences after the introduction of genetic services.
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Familia/psicología , Servicios Genéticos/estadística & datos numéricos , Estrés Psicológico , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Neoplasias Colorrectales Hereditarias sin Poliposis/genética , Depresión/psicología , Composición Familiar , Femenino , Humanos , Masculino , Persona de Mediana Edad , Mutación/genética , Adulto JovenRESUMEN
PURPOSE: Lynch syndrome poses multiple cancer risks, yet attention has focused on screening for colorectal cancer. Estimated risks for endometrial cancer equal risks for colorectal cancer. This study (1) evaluated women's perceived risks for cancers, (2) compared endometrial cancer screening and colonoscopy, and (3) identified predictors of screening before and after genetic testing. PATIENTS AND METHODS: Sixty-five adult women at 50% risk for carrying a cancer-predisposing mutation, without a history of endometrial cancer or hysterectomy, participated in genetic counseling and received unequivocal genetic test results for Lynch syndrome. Participants completed questionnaires before and after receipt of genetic results. RESULTS: Pretest, perceived risks for colon cancer were significantly higher than for extracolonic cancers (P < .0001). Use of colonoscopy was significantly higher (P = .006) than endometrial cancer screening. Post-test, carriers demonstrated a significant (P < .0001) increase in their perceived risk for extracolonic cancers and increased both colonoscopy (P = .79) and endometrial cancer screening (P = .11). Mutation status, age, perceived likelihood of carrying a mutation, and communication of test results to their physician independently predicted cancer screening at follow-up. CONCLUSION: Women in families with Lynch syndrome are less aware of their risks for extracolonic cancers and undergo endometrial cancer screening significantly less often than colonoscopy before genetic counseling. Given the significantly increased risks for endometrial and ovarian cancers and the mortality associated with ovarian cancer, additional efforts to inform families of cancer risks and screening recommendations seem prudent. Physicians play a critical role in ensuring appropriate cancer screening in women with Lynch syndrome.
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Neoplasias del Colon/epidemiología , Neoplasias Colorrectales Hereditarias sin Poliposis/genética , Neoplasias Endometriales/epidemiología , Mutación , Adulto , Factores de Edad , Anciano , Análisis de Varianza , Neoplasias del Colon/etiología , Colonoscopía , Neoplasias Endometriales/etiología , Femenino , Asesoramiento Genético , Pruebas Genéticas , Heterocigoto , Humanos , Renta , Persona de Mediana Edad , Valor Predictivo de las Pruebas , Medición de Riesgo , Factores de RiesgoRESUMEN
PURPOSE: Hereditary nonpolyposis colorectal cancer (HNPCC) is the most common hereditary form of colon cancer. Cancer screening recommendations differ between individuals identified to carry an HNPCC mutation and those who do not carry a known family mutation. We assessed the impact of genetic counseling and testing (GCT) on the use of endoscopic screening procedures and adherence to recommended endoscopic screening guidelines in 56 asymptomatic at-risk individuals from families known to carry an HNPCC mutation. PATIENTS AND METHODS: We analyzed data on colonoscopy and flexible sigmoidoscopy screenings collected before GCT and 6 months and 12 months post-GCT on 17 mutation-positive and 39 true mutation-negative individuals. Main outcome measures were use of endoscopic screening and adherence to recommended guidelines for the relevant mutation status. Mutation status, age, sex, employment, and income were analyzed as predictor variables. RESULTS: Among mutation-negative individuals, use of colonoscopy and flexible sigmoidoscopy decreased significantly between pre- and post-GCT (P <.00001 and P <.0003, respectively). Among mutation-positive individuals, a nonsignificant increase (P =.24) in use was noted. Age was also associated with use of endoscopic screening after GCT (P =.03). Mutation status (odds ratio [OR], 7.5; P =.02) and employment (OR, 8.6; P =.025) were associated with nonadherence to endoscopic screening guidelines. More mutation-negative individuals strictly adhered to guidelines than did mutation-positive individuals (87% v 65%). CONCLUSION: Genetic counseling and testing for HNPCC significantly influences the use of colonic endoscopy and adherence to recommendations for colon cancer screening.