The Human Genome Project and the continuing advances in DNA sequencing technology have ushered in a new era in genomic medicine. Successful translation of genomic medicine into clinical care will require that providers of this information are aware of the level of understanding, attitudes, perceived risks, benefits, and concerns of their patients. We used a mixed methods approach to conduct in-depth interviews with participants in the NCI-funded Breast Cancer Family Registry (BCFR). Our goal was to gain a better understanding of attitudes towards different types and amounts of genomic information, current interest in pursuing genomic testing, and perceived risks and benefits. We interviewed 32 women from the six BCFR sites in the USA, Canada, and Australia. In this sample of women with a personal or family history of breast cancer, we found high acknowledgement of the potential of genetics/genomics to improve their own health and that of their family members through lifestyle changes or alterations in their medical management. Respondents were more familiar with cancer genetics than the genetics of other diseases. Concerns about the testing itself included a potential sense of loss of control over health, feelings of guilt on passing on a mutation to a child, loss of privacy and confidentiality, questions about the test accuracy, and the potential uncertainty of the significance of test results. These data provide important insights into attitudes about the introduction of increasingly complex genetic testing, to inform interventions to prepare individuals for the introduction of this new technology into their clinical care.
BACKGROUND: Involvement with Child Protective Services (CPS) provides an opportunity to recognize those children at risk for ongoing adverse childhood experiences (ACEs). The relationship between ACEs and child health among CPS-involved children and the role of primary care providers (PCPs) in moderating this relationship is unknown. METHODS:We conducted a convergent mixed-methods study of caregivers of children age 2 to 12 years with a CPS finding of physical abuse, modeling the association between cumulative ACEs and child health-related quality of life (HRQoL) using the PedsQL4.0, a validated 23-item survey of multidimensional health, with and without the moderator of a patient-centered medical home. Interviews elicited descriptions of a child's experience with ACEs, the impact of ACEs on child health, and the role of a PCP in this context.RESULTS: One hundred seventy-eight surveyed caregivers reported a mean of 5.5 (63.3) ACE exposures per child. In a fully adjusted model, each ACE resulted in a 1.3-point (95% confidence interval: 0.7-2.0) reduction in HRQoL, a clinically important difference in HRQoL associated with ACE exposures. This association was explained by reduced psychosocial HRQoL and was not moderated by a patient-centered medical home. Twenty-seven interviewed caregivers described the influence of ACEs on a child's health. Many felt that a trusted PCP could support a child's well-being after such experiences.CONCLUSIONS: Children with CPS involvement have ACE exposures that are associated with reduced HRQoL. Although PCPs are often unaware of CPS involvement or other ACEs, many caregivers welcome the support of a child's PCP in improving child well-being after adversity.
Resumen ObjetivoEstablecer recomendaciones para la toma de decisiones de manejo en radioterapia durante la pandemia de COVID-19, adaptadas a un país con recursos de salud limitados. MétodosA través de una revisión rápida de la literatura se buscaron publicaciones que describieran medidas para reducir el riesgo de infección por COVID-19, así como también pautas de manejo para reducir la carga de trabajo en las unidades de radioterapia. Se incluyeron en el alcance de esta revisión las siguientes patologías: tumores ginecológicos, cáncer de mama, tumores gastrointestinales, tumores genitourinarios, tumores de cabeza y cuello, cáncer de piel, tumores del sistema nervioso central y linfomas. Un grupo de expertos discutió en línea los datos extraídos y redactó las recomendaciones. Mediante un método Delphi modificado, se evaluó el consenso entre 14 radio-oncólogos certificados. Se evaluó la calidad de la evidencia que sustentó las recomendaciones sobre esquemas de tratamiento. ResultadosSe incluyeron un total de 57 documentos. De 25 trabajos se extrajeron las estrategias para reducir el riesgo de infección. De los restantes, se obtuvieron las recomendaciones para cada patología. Las recomendaciones están orientadas a establecer escenarios específicos donde se pueden omitir, diferir, priorizar y acortar los tratamientos. En el ítem de acortar se recomiendan esquemas de tratamiento para cada patología, priorizando los esquemas hipofraccionados cuando fue posible.
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