Grant Number:	1R01CA129142-01A2 Interpret this number
Primary Investigator:	Kinney, Anita
Organization:	University Of Utah
Project Title:	Bridging Geographic Barriers: Remote Cancer Genetics Counseling for Rural Women
Fiscal Year:	2009

DESCRIPTION (provided by applicant): Persons living in rural and other geographically underserved areas encounter considerable barriers that reduce or prevent convenient access to quality cancer genetic services. In-person genetic counseling for appropriately selected women by cancer genetic specialists has generally been accepted as the standard of care. The use of telecommunications to deliver clinical genetic services at a site distant from specialists has been suggested as an approach to reduce disparity in access in geographically challenged areas. Remote genetic counseling has the potential to improve health and enhance informed decision-making through access to information and communication with experienced providers without adversely affecting the quality of care. Although telephone counseling has been effectively used as a supplement to in-person genetic services, no published data are available that compare telephone genetic counseling as the sole source of pre-test and post-test disclosure counseling to standard in-person genetic counseling among high-risk women. However, many companies and some providers are offering telephone-based genetic counseling and testing services for cancer susceptibility. Many clinicians and policy makers are concerned about the quality of such counseling and whether counseling conducted over the telephone is as effective as standard in- person counseling. Before widespread adoption and diffusion of telephone-delivered cancer genetic services, it is important to determine whether this mode of genetic communication is comparable to the conventional in-person counseling model within the group where remote counseling is likely to be of greatest benefit, women residing in rural and other underserved areas. This two-group randomized equivalency/non-inferiority trial is designed to determine if genetic counseling delivered by telephone is an acceptable alternative to traditional in-person genetic counseling among 1132 geographically isolated women who have a personal and/or family history of breast and/or ovarian cancer strong enough to suggest that genetic counseling and testing is indicated. We will evaluate the following outcomes: genetic testing uptake, psychological distress, and health-related quality of life. We will also compare the two groups with regard to costs, patient centered communication, and informed decision- making outcomes such as decisional conflict, decision regret and perceived personal control as well as decisions regarding preventive strategies. Overall, our study's findings will provide important information to cancer centers and local public health decision makers about the safety, efficacy, and costs of delivering telephone-based clinical cancer genetic services for rural women at risk for having BRCA 1/2 mutations. PUBLIC HEALTH RELEVANCE: Reducing rural health disparities is a national priority. Our study is innovative in that our approach is unprecedented with regard to provision of remote cancer genetic services to geographically underserved women at increased risk for hereditary breast and ovarian cancer. Many of the outcomes that will be evaluated are important for determining whether telephone- delivered genetic counseling sessions are a reasonable alternative to conventional face-to-face counseling. Outcomes studied include anxiety, cancer worry, quality of life, informed-decision making, costs, as well as utilization of BRCA1/2 gene testing and cancer prevention strategies. Prior to widespread use of telephone-delivered clinical cancer genetic counseling services, it is critical to determine whether efficacy and safety are considerably compromised in a population that is most likely to use these services. Our study's findings may be used to inform clinical practice in rural and other remote areas as well as cancer control policy.




Female family members lack understanding of indeterminate negative BRCA1/2 test results shared by probands.
Authors: Himes D.O. , Gibbons D.K. , Birmingham W.C. , Beckstrand R.L. , Gammon A. , Kinney A.Y. , Clayton M.F. .
Source: Journal Of Genetic Counseling, 2019-06-14 00:00:00.0; , .
EPub date: 2019-06-14 00:00:00.0.
PMID: 31199558
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Predictors of Response Outcomes for Research Recruitment Through a Central Cancer Registry: Evidence From 17 Recruitment Efforts for Population-Based Studies.
Authors: Millar M.M. , Kinney A.Y. , Camp N.J. , Cannon-Albright L.A. , Hashibe M. , Penson D.F. , Kirchhoff A.C. , Neklason D.W. , Gilsenan A.W. , Dieck G.S. , et al. .
Source: American Journal Of Epidemiology, 2019-05-01 00:00:00.0; 188(5), p. 928-939.
PMID: 30689685
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Preferences for multigene panel testing for hereditary breast cancer risk among ethnically diverse BRCA-uninformative families.
Authors: Vicuña B. , Delaney H.D. , Flores K.G. , Ballinger L. , Royce M. , Dayao Z. , Pal T. , Kinney A.Y. .
Source: Journal Of Community Genetics, 2018 Jan; 9(1), p. 81-92.
EPub date: 2017-10-02 00:00:00.0.
PMID: 28971318
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Genetic Testing in a Population-Based Sample of Breast and Ovarian Cancer Survivors from the REACH Randomized Trial: Cost Barriers and Moderators of Counseling Mode.
Authors: Steffen L.E. , Du R. , Gammon A. , Mandelblatt J.S. , Kohlmann W.K. , Lee J.H. , Buys S.S. , Stroup A.M. , Campo R.A. , Flores K.G. , et al. .
Source: Cancer Epidemiology, Biomarkers & Prevention : A Publication Of The American Association For Cancer Research, Cosponsored By The American Society Of Preventive Oncology, 2017 Dec; 26(12), p. 1772-1780.
EPub date: 2017-09-29 00:00:00.0.
PMID: 28971986
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Reply to P.R. Benusiglio et al.
Authors: Kinney A.Y. , Kohlmann W. , Brumbach B.H. , Schwartz M.D. .
Source: Journal Of Clinical Oncology : Official Journal Of The American Society Of Clinical Oncology, 2017-04-10 00:00:00.0; 35(11), p. 1255-1256.
EPub date: 2017-01-23 00:00:00.0.
PMID: 28113008
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Care delivery considerations for widespread and equitable implementation of inherited cancer predisposition testing.
Authors: Cragun D. , Kinney A.Y. , Pal T. .
Source: Expert Review Of Molecular Diagnostics, 2017 Jan; 17(1), p. 57-70.
EPub date: 2016-12-13 00:00:00.0.
PMID: 27910721
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Randomized Noninferiority Trial Of Telephone Delivery Of Brca1/2 Genetic Counseling Compared With In-person Counseling: 1-year Follow-up
Authors: Kinney A.Y. , Steffen L.E. , Brumbach B.H. , Kohlmann W. , Du R. , Lee J.H. , Gammon A. , Butler K. , Buys S.S. , Stroup A.M. , et al. .
Source: Journal Of Clinical Oncology : Official Journal Of The American Society Of Clinical Oncology, 2016-08-20 00:00:00.0; 34(24), p. 2914-24.
PMID: 27325848
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Factors Associated With Interest In Gene-panel Testing And Risk Communication Preferences In Women From Brca1/2 Negative Families
Authors: Flores K.G. , Steffen L.E. , McLouth C.J. , Vicuña B.E. , Gammon A. , Kohlmann W. , Vigil L. , Dayao Z.R. , Royce M.E. , Kinney A.Y. .
Source: Journal Of Genetic Counseling, 2016-08-06 00:00:00.0; , .
PMID: 27496122
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Breast Cancer Risk Perceptions Among Relatives Of Women With Uninformative Negative Brca1/2 Test Results: The Moderating Effect Of The Amount Of Shared Information
Authors: Himes D.O. , Clayton M.F. , Donaldson G.W. , Ellington L. , Buys S.S. , Kinney A.Y. .
Source: Journal Of Genetic Counseling, 2016 Apr; 25(2), p. 258-69.
PMID: 26245632
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Recap: Economic Evaluation Alongside A Clinical Trial Of Telephone Versus In-person Genetic Counseling For Brca1/2 Mutations In Geographically Underserved Areas
Authors: Chang Y. , Near A.M. , Butler K.M. , Hoeffken A. , Edwards S.L. , Stroup A.M. , Kohlmann W. , Gammon A. , Buys S.S. , Schwartz M.D. , et al. .
Source: Journal Of Oncology Practice / American Society Of Clinical Oncology, 2016 Jan; 12(1), p. 59.
PMID: 26759468
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Expanding Access To Brca1/2 Genetic Counseling With Telephone Delivery: A Cluster Randomized Trial
Authors: Kinney A.Y. , Butler K.M. , Schwartz M.D. , Mandelblatt J.S. , Boucher K.M. , Pappas L.M. , Gammon A. , Kohlmann W. , Edwards S.L. , Stroup A.M. , et al. .
Source: Journal Of The National Cancer Institute, 2014 Dec; 106(12), .
PMID: 25376862
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