As healthcare reimbursement is increasingly tied to value-of-service, it is critical for the genetic counselor (GC) profession to demonstrate the value added by GCs through outcomes research. We conducted a rapid systematic literature review to identify outcomes of genetic counseling. Web of Science (including PubMed) and CINAHL databases were systematically searched to identify articles meeting the following criteria: 1) measures were assessed before and after genetic counseling (pre-post design) or comparisons were made between a GC group vs. a non-GC group (comparative cohort design); 2) genetic counseling outcomes could be assessed independently of genetic testing outcomes, and 3) genetic counseling was conducted by masters-level genetic counselors, or non-physician providers. Twenty-three papers met the inclusion criteria. The majority of studies were in the cancer genetic setting and the most commonly measured outcomes included knowledge, anxiety or distress, satisfaction, perceived risk, genetic testing (intentions or receipt), health behaviors, and decisional conflict. Results suggest that genetic counseling can lead to increased knowledge, perceived personal control, positive health behaviors, and improved risk perception accuracy as well as decreases in anxiety, cancer-related worry, and decisional conflict. However, further studies are needed to evaluate a wider array of outcomes in more diverse genetic counseling settings.
Original research articleIntegration of genetic information into health care can improve health outcomes through improved diagnosis, risk assessment, prognosis, and treatment decisions. However, to fully realize the benefits of genetic information, it will be important to identify successful models of care, 1 particularly for the field of adult genetics, which is growing due to increasing recognition of adults with genetic conditions and expanding genetic testing opportunities for adult-onset conditions. 2 Delivery models for genetic consultative services were recently described in a systematic review of genetics in health 3 ; they include (i) the traditional model of multidisciplinary specialist clinics or coordinated services between geneticists and other specialists-the latter is favored for adult-onset conditions-and (ii) the emerging model, in which genetic services are integrated directly within primary care and other specialties. The emerging model can be supported by information technology and software applications assisting in genetic risk assessment 4,5 or by embedding genetic nurse coordinators or genetic counselors within clinics. 6,7 The traditional model of multidisciplinary specialist clinics is generally organized as a regional genetic center, usually affiliated with an academic medical center, offering clinics for various patient-care needs (e.g., prenatal, cancer genetic, and pediatric genetic needs).3 These regional centers can provide expertise to smaller genetics clinics in the community, like a hub-and-spoke network.3 This can be achieved by the core (hub) facility accepting referrals from the peripheral clinics (spokes) or through the use of (i) "telegenetics, " which brings core genetic services into peripheral clinics via videoteleconferencing, 8,9 and (ii) telephone genetic consultation, which provides core genetic services directly to patients. 10,11The health professionals providing clinical genetic consultative services are genetic specialists (medical geneticists, genetic counselors, and nurse geneticists) or non-genetics health-care professionals who are increasingly using genetics in routine care, including primary-care providers, other specialists, nurses, psychologists, and social workers. 3 The lack of medical geneticists has been recognized as a serious problem 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 Cen...
Our results demonstrate the varied value of genetic testing from the perspective of clinical leadership within a health-care system. Engaging organizational leadership in understanding the various reasons for genetic testing and its value beyond clinical utility may increase adoption of genetic tests to support patient-centered care.Genet Med advance online publication 15 December 2016.
OBJECTIVE To identify and characterize patient-provider communication patterns during disclosure of Alzheimer’s disease genetic susceptibility test results and to assess whether these patterns reflect differing models of genetic counseling. METHODS 262 genetic counseling session audio-recordings were coded using the Roter Interactional Analysis System. Cluster analysis was used to distinguish communication patterns. Bivariate analyses were used to identify characteristics associated with the patterns. RESULTS Three patterns were identified: Biomedical-Provider-Teaching (40%), Biomedical-Patient-Driven (34.4%), and Psychosocial-Patient-Centered (26%). Psychosocial-Patient-Centered and Biomedical-Provider-Teaching sessions included more female participants while the Biomedical-Patient-Driven sessions included more male participants (p = 0.04). CONCLUSION Communication patterns observed reflected the teaching model primarily, with genetic counseling models less frequently used. The emphasis on biomedical communication may potentially be at the expense of more patient-centered approaches. PRACTICE IMPLICATIONS To deliver more patient-centered care, providers may need to better balance the ratio of verbal exchange with their patients, as well as their educational and psychosocial discussions. The delineation of these patterns provides insights into the genetic counseling process that can be used to improve the delivery of genetic counseling care. These results can also be used in future research designed to study the association between patient-centered genetic counseling communication and improved patient outcomes.
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