A cancer genetics toolkit improves access to genetic services through documentation and use of the family history by primary-care clinicians
ABSTRACT Purpose:We developed, implemented, and evaluated a multicomponent cancer genetics toolkit designed to improve recognition and appropriate referral of individuals at risk for hereditary cancer syndromes.Methods:We evaluated toolkit implementation in the women's clinics at a large Veterans Administration medical center using mixed methods, including pre-post semistructured interviews, clinician surveys, and chart reviews, and during implementation, monthly tracking of genetic consultation requests and use of a reminder in the electronic health record. We randomly sampled 10% of progress notes 6 months before (n = 139) and 18 months during implementation (n = 677).Results:The toolkit increased cancer family history documentation by almost 10% (26.6% pre- and 36.3% postimplementation). The reminder was a key component of the toolkit; when used, it was associated with a twofold increase in cancer family history documentation (odds ratio = 2.09; 95% confidence interval: 1.39-3.15), and the history was more complete. Patients whose clinicians completed the reminder were twice as likely to be referred for genetic consultation (4.1-9.6%, P < 0.0001).Conclusion:A multicomponent approach to the systematic collection and use of family history by primary-care clinicians increased access to genetic services.Genet Med advance online publication 13 June 2013Genetics in Medicine (2013); doi:10.1038/gim.2013.75.
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- "Programs evaluated to date have not succeeded in broadening the reach of genetic services and continue to attract predominantly women who are White and educated (Scheuner et al., 2014). "
ABSTRACT: The past decade has witnessed rapid advances in human genome sequencing technology and in the understanding of the role of genetic and epigenetic alterations in cancer development. These advances have raised hopes that such knowledge could lead to improvements in behavioral risk reduction interventions, tailored screening recommendations, and treatment matching that together could accelerate the war on cancer. Despite this optimism, translation of genomic discovery for clinical and public health applications has moved relatively slowly. To date, health psychologists and the behavioral sciences generally have played a very limited role in translation research. In this report we discuss what we mean by genomic translational research and consider the social forces that have slowed translational research, including normative assumptions that translation research must occur downstream of basic science, thus relegating health psychology and other behavioral sciences to a distal role. We then outline two broad priority areas in cancer prevention, detection, and treatment where evidence will be needed to guide evaluation and implementation of personalized genomics: (a) effective communication, to broaden dissemination of genomic discovery, including patient-provider communication and familial communication, and (b) the need to improve the motivational impact of behavior change interventions, including those aimed at altering lifestyle choices and those focusing on decision making regarding targeted cancer treatments and chemopreventive adherence. We further discuss the role that health psychologists can play in interdisciplinary teams to shape translational research priorities and to evaluate the utility of emerging genomic discoveries for cancer prevention and control. (PsycINFO Database Record (c) 2015 APA, all rights reserved).American Psychologist 02/2015; 70(2):91-104. DOI:10.1037/a0036568 · 6.87 Impact Factor
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ABSTRACT: Objective:To characterize the delivery of genetic consultative services for adults, we examined the prevalence and organizational determinants of genetic consult availability and the organization of these services in the Veterans Health Administration.Methods:We conducted a Web-based survey of Veterans Health Administration clinical leaders. We summarized facility characteristics using descriptive statistics. Multivariate logistic regression assessed associations between organizational characteristics and consult availability.Results:We received 353 survey responses from key informants representing 141 Veterans Affairs Medical Centers. Clinicians could obtain genetic consults at 110 (78%) Veterans Affairs Medical Centers. Cancer genetic and neurogenetic consults were most common. Academic affiliation (odds ratio = 3.0; 95% confidence interval: 1.1-8.6) and provider education about genetics (odds ratio = 2.9; 95% confidence interval: 1.1-7.8) were significantly associated with consult availability. The traditional model of multidisciplinary specialty clinics or coordinated services between geneticists and other providers was most prevalent, although variability in the organization of these services was described, with consults available on-site, at another Veterans Affairs Medical Center, via telegenetics, or at non-Veterans Health Administration facilities. The emerging model of nongeneticists integrating genetics into their practices was also reported, with considerable variability by specialty.Conclusion:Both traditional and emerging models for genetic consultation are available in the Veterans Health Administration; however, there is variability in service organization that could influence quality of care.Genet Med advance online publication 6 February 2014Genetics in Medicine (2014); doi:10.1038/gim.2013.202.Genetics in medicine: official journal of the American College of Medical Genetics 02/2014; 16(8). DOI:10.1038/gim.2013.202 · 6.44 Impact Factor
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ABSTRACT: "The Pregnancy and Health Profile," (PHP) is a free genetic risk assessment software tool for primary prenatal providers that collects patient-entered family (FHH), personal, and obstetrical health history, performs risk assessment, and presents the provider with clinical decision support during the prenatal encounter. The tool is freely available for download at www.hughesriskapps.net. We evaluated the implementation of PHP in four geographically diverse clinical sites. Retrospective chart reviews were conducted for patients seen prior to the study period and for patients who used the PHP to collect data on documentation of FHH, discussion of cystic fibrosis (CF) and hemoglobinopathy (HB) carrier screening, and CF and HB interventions (tests, referrals). Five hundred pre-implementation phase and 618 implementation phase charts were reviewed. Documentation of a 3-generation FHH or pedigree improved at three sites; patient race/ethnicity at three sites, father of the baby (FOB) race/ethnicity at all sites, and ancestry for the patient and FOB at three sites (P < 0.001-0001). CF counseling improved for implementation phase patients at one site (8% vs. 48%, P < 0.0001) and CF screening/referrals at two (2% vs. 14%, P < 0.0001; 6% vs. 14%; P = 0.05). Counseling and intervention rates did not increase for HB. This preliminary study suggests that the PHP can improve documentation of FHH, race, and ancestry, as well as the compliance with current CF counseling and intervention guidelines in some prenatal clinics. Future evaluation of the PHP should include testing in a larger number of clinical environments, assessment of additional performance measures, and evaluation of the system's overall clinical utility. © 2014 Wiley Periodicals, Inc.American Journal of Medical Genetics Part C Seminars in Medical Genetics 03/2014; 166(1). DOI:10.1002/ajmg.c.31389 · 3.54 Impact Factor