Abstract
In cancer genetics, technological advances (next generation sequencing) and the expansion of genetic test options have resulted in lowered costs and increased access to genetic testing. Despite this, the majority of patients utilizing cancer genetics services lack diversity of gender, ethnicity, and socioeconomic status. Through retrospective chart review, we compared outcomes of cancer genetics consultations at a tertiary cancer center and a Federally Qualified Health Center (FQHC) (58 tertiary and 23 FQHC patients) from 2013 to 2015. The two groups differed in race, ethnicity, use of translator services, and type of insurance coverage. There were also significant differences in completeness of family history information, with more missing information about relatives in the FQHC group. In spite of these differences, genetic testing rates among those offered testing were comparable across the two groups with 74% of tertiary patients and 60% of FQHC patients completing testing. Implementation of community-based cancer genetics outreach clinics represents an opportunity to improve access to genetic counseling services, but more research is needed to develop effective counseling models for diverse patient populations.
Similar content being viewed by others
References
Allford A, Qureshi N, Barwell J, Lewis C, Kai J (2014) What hinders minority ethnic access to cancer genetics services and what may help[quest]. Eur J Human Genet EJHG 22(7):866–874. https://doi.org/10.1038/ejhg.2013.257
Anderson B, McLosky J, Wasilevich E, Lyon-Callo S, Duquette D, Copeland G (2012) Barriers and facilitators for utilization of genetic counseling and risk assessment services in young female breast cancer survivors. J Cancer Epidemiol 2012:11. https://doi.org/10.1155/2012/298745
Armstrong J, Toscano M, Kotchko N, Friedman S, Schwartz MD, Virgo KS, Lynch K, Andrews JE, Aguado Loi CX, Bauer JE, Casares C, Bourquardez Clark E, Kondoff MR, Molina AD, Abdollahian M, Walker G, Sutphen R (2015) Utilization and outcomes of BRCA genetic testing and counseling in a national commercially insured population: the ABOUT study. JAMA Oncol 1(9):1–10. https://doi.org/10.1001/jamaoncol.2015.3048
Bondy ML, Newman LA (2003) Breast cancer risk assessment models. Cancer 97(S1):230–235. https://doi.org/10.1002/cncr.11018
Burt RW, Cannon JA, David DS, Early DS, Ford JM, Giardiello FM, Halverson AL, Hamilton SR, Hampel H, Ismail MK, Jasperson K, Klapman JB, Lazenby AJ, Lynch PM, Mayer RJ, Ness RM, Provenzale D, Rao MS, Shike M, Steinbach G, Terdiman JP, Weinberg D, Dwyer M, Freedman-Cass D, National Comprehensive Cancer Network (2013) Colorectal cancer screening. J Natl Compr Cancer Netw 11(12):1538–1575. https://doi.org/10.6004/jnccn.2013.0180
Butrick M, Kelly S, Peshkin BN, Luta G, Nusbaum R, Hooker GW, Graves K, Feeley L, Isaacs C, Valdimarsdottir HB, Jandorf L, DeMarco T, Wood M, McKinnon W, Garber J, McCormick SR, Schwartz MD (2015) Disparities in uptake of BRCA1/2 genetic testing in a randomized trial of telephone counseling. Genet Med 17(6):467–475. https://doi.org/10.1038/gim.2014.125
Daly MB, Pilarski R, Axilbund JE, Buys SS, Crawford B, Friedman S, Garber JE, Horton C, Kaklamani V, Klein C, Kohlmann W, Kurian A, Litton J, Madlensky L, Marcom PK, Merajver SD, Offit K, Pal T, Pasche B, Reiser G, Shannon KM, Swisher E, Voian NC, Weitzel JN, Whelan A, Wiesner GL, Dwyer MA, Kumar R, National Comprehensive Cancer Network (2014) Genetic/familial high-risk assessment: breast and ovarian, version 1.2014. J Nat Compr Cancer Netw: JNCCN 12(9):1326–1338
Delikurt T, Williamson GR, Anastasiadou V, Skirton H (2015) A systematic review of factors that act as barriers to patient referral to genetic services. Eur J Hum Genet 23(6):739–745. https://doi.org/10.1038/ejhg.2014.180
Eccles DM, Mitchell G, Monteiro AN, Schmutzler R, Couch FJ, Spurdle AB, Gomez-Garcia EB (2015) BRCA1 and BRCA2 genetic testing—pitfalls and recommendations for managing variants of uncertain clinical significance. Ann Oncol: Off J Eur Soc Med Oncol/ESMO 26(10):2057–2065. https://doi.org/10.1093/annonc/mdv278
Forman AD, Hall MJ (2009) Influence of race/ethnicity on genetic counseling and testing for hereditary breast and ovarian cancer. Breast J 15(Suppl 1):S56–S62. https://doi.org/10.1111/j.1524-4741.2009.00798.x
Gao Q, Neuhausen S, Cummings S, Luce M, Olopade OI (1997) Recurrent germ-line BRCA1 mutations in extended African American families with early-onset breast cancer. Am J Hum Genet 60(5):1233–1236
Gao Q, Tomlinson G, Das S, Cummings S, Sveen L, Fackenthal J, Schumm P, Olopade OI (2000) Prevalence of BRCA1 and BRCA2 mutations among clinic-based African American families with breast cancer. Hum Genet 107(2):186–191. https://doi.org/10.1007/s004390000290
Hall MJ, Reid JE, Burbidge LA, Pruss D, Deffenbaugh AM, Frye C, Wenstrup RJ, Ward BE, Scholl TA, Noll WW (2009) BRCA1 and BRCA2 mutations in women of different ethnicities undergoing testing for hereditary breast-ovarian cancer. Cancer 115(10):2222–2233. https://doi.org/10.1002/cncr.24200
Hermel DJ, McKinnon WC, Wood ME, Greenblatt MS (2017) Multi-gene panel testing for hereditary cancer susceptibility in a rural Familial Cancer Program. Familial Cancer 16(1):159–166. https://doi.org/10.1007/s10689-016-9913-5
HRSA. (2014) 2014 Health Center Profile: Whittier Street Health Committee, INC. Roxbury, Massachusetts. Health Resources and Services Administration, Rockville, MD. http://bphc.hrsa.gov/uds/datacenter.aspx?q=d&bid=012070&state=MA&year=2014. Accessed 12 February 2016
Huo D, Senie RT, Daly M, Buys SS, Cummings S, Ogutha J, Hope K, Olopade OI (2009) Prediction of BRCA mutations using the BRCAPRO model in clinic-based African American, Hispanic, and other minority families in the United States. J Clin Oncol Off J Am Soc Clin Oncol 27(8):1184–1190. https://doi.org/10.1200/JCO.2008.17.5869
Jones T, Lockhart JS, Mendelsohn-Victor KE, Duquette D, Northouse LL, Duffy SA, Donley R, Merajver SD, Milliron KJ, Roberts JS, Katapodi MC (2016) Use of cancer genetics services in African-American young breast cancer survivors. Am J Prev Med 51(4):427–436. https://doi.org/10.1016/j.amepre.2016.03.016
Joseph G, Guerra C (2015) To worry or not to worry: breast cancer genetic counseling communication with low-income Latina immigrants. J Commun Genet 6(1):63–76. https://doi.org/10.1007/s12687-014-0202-4
Kinney AY, Gammon A, Coxworth J, Simonsen SE, Arce-Laretta M (2010) Exploring attitudes, beliefs, and communication preferences of Latino community members regarding BRCA1/2 mutation testing and preventive strategies. Genet Med 12(2):105–115. https://doi.org/10.1097/GIM.0b013e3181c9af2d
Komenaka IK, Nodora JN, Madlensky L, Winton LM, Heberer MA, Schwab RB, Weitzel JN, Martinez ME (2016) Participation of low-income women in genetic cancer risk assessment and BRCA 1/2 testing: the experience of a safety-net institution. J Commun Genet 7(3):177–183. https://doi.org/10.1007/s12687-015-0257-x
Lee R, Beattie M, Crawford B, Mak J, Stewart N, Komaromy M, Esserman L, Shaw L, McLennan J, Strachowski L, Luce J, Ziegler J (2005) Recruitment, genetic counseling, and BRCA testing for underserved women at a public hospital. Genet Test 9(4):306–312. https://doi.org/10.1089/gte.2005.9.306
Manrai AK, Funke BH, Rehm HL, Olesen MS, Maron BA, Szolovits P, Margulies DM, Loscalzo J, Kohane IS (2016) Genetic misdiagnoses and the potential for health disparities. N Engl J Med 375(7):655–665. https://doi.org/10.1056/NEJMsa1507092
McCarthy AM, Bristol M, Domchek SM, Groeneveld PW, Kim Y, Motanya UN, Shea JA, Armstrong K (2016) Health care segregation, physician recommendation, and racial disparities in BRCA1/2 testing among women with breast cancer. J Clin Oncol Off J Am Soc Clin Oncol 34(22):2610–2618. https://doi.org/10.1200/JCO.2015.66.0019
Mercado RC, Hampel H, Kastrinos F, Steyerberg E, Balmana J, Stoffel E, Cohn DE, Backes FJ, Hopper JL, Jenkins MA, Lindor NM, Casey G, Haile R, Madhavan S, de la Chapelle A, Syngal S, Colon Cancer Family Registry (2012) Performance of PREMM(1,2,6), MMRpredict, and MMRpro in detecting Lynch syndrome among endometrial cancer cases. Genet Med 14(7):670–680. https://doi.org/10.1038/gim.2012.18
Mitchell RJ, Brewster D, Campbell H, Porteous ME, Wyllie AH, Bird CC, Dunlop MG (2004) Accuracy of reporting of family history of colorectal cancer. Gut 53(2):291–295. https://doi.org/10.1136/gut.2003.027896
Murff HJ, Byrne D, Syngal S (2004) Cancer risk assessment: quality and impact of the family history interview. Am J Prev Med 27(3):239–245. https://doi.org/10.1016/j.amepre.2004.05.003
NCCN (2013) NCCN clinical practice guidelines in oncology: breast cancer risk reduction version 1.2013. https://www.nccn.org/professionals/physician_gls/f_guidelines.asp. Accessed 19 February 2014
Olaya W, Esquivel P, Wong JH, Morgan JW, Freeberg A, Roy-Chowdhury S, Lum SS (2009) Disparities in BRCA testing: when insurance coverage is not a barrier. Am J Surg 198:562–565. https://doi.org/10.1016/j.amjsurg.2009.07.003
Parmigiani G, Chen S, Iversen ES Jr, Friebel TM, Finkelstein DM, Anton-Culver H, Ziogas A, Weber BL, Eisen A, Malone KE, Daling JR, Hsu L, Ostrander EA, Peterson LE, Schildkraut JM, Isaacs C, Corio C, Leondaridis L, Tomlinson G, Amos CI, Strong LC, Berry DA, Weitzel JN, Sand S, Dutson D, Kerber R, Peshkin BN, Euhus DM (2007) Validity of models for predicting BRCA1 and BRCA2 mutations. Ann Intern Med 147(7):441–450. https://doi.org/10.7326/0003-4819-147-7-200710020-00002
Ricker C, Culver JO, Lowstuter K, Sturgeon D, Sturgeon JD, Chanock CR, Gauderman WJ, McDonnell KJ, Idos GE, Gruber SB (2016) Increased yield of actionable mutations using multi-gene panels to assess hereditary cancer susceptibility in an ethnically diverse clinical cohort. Cancer Genet 209(4):130–137. https://doi.org/10.1016/j.cancergen.2015.12.013
Ricker C, Lagos V, Feldman N, Hiyama S, Fuentes S, Kumar V, Gonzalez K, Palomares M, Blazer K, Lowstuter K, MacDonald D, Weitzel J (2006) If we build it ... will they come?—establishing a cancer genetics services clinic for an underserved predominantly Latina cohort. J Genet Couns 15(6):505–514. https://doi.org/10.1007/s10897-006-9052-5
Sherman KA, Miller SM, Shaw L-K, Cavanagh K, Sheinfeld Gorin S (2014) Psychosocial approaches to participation in BRCA1/2 genetic risk assessment among African American women: a systematic review. J Commun Genet 5(2):89–98. https://doi.org/10.1007/s12687-013-0164-y
Sussner KM, Edwards T, Villagra C, Rodriguez MC, Thompson HS, Jandorf L, Valdimarsdottir HB (2015) BRCA genetic counseling among at-risk Latinas in New York City: new beliefs shape new generation. J Genet Couns 24(1):134–148. https://doi.org/10.1007/s10897-014-9746-z
Thompson HS et al (2002) Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiol Biomarkers Prev 11:1579–1585
Thompson HS, Valdimarsdottir HB, Jandorf L, Redd W (2003) Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women. Patient Educ Couns 51(3):217–227. https://doi.org/10.1016/S0738-3991(02)00219-7
Tyrer J, Duffy SW, Cuzick J (2004) A breast cancer prediction model incorporating familial and personal risk factors. Stat Med 23(7):1111–1130. https://doi.org/10.1002/sim.1668
Vadaparampil ST, McIntyre J, Quinn GP (2010) Awareness, perceptions, and provider recommendation related to genetic testing for hereditary breast cancer risk among at-risk Hispanic women: similarities and variations by sub-ethnicity. J Genet Couns 19(6):618–629. https://doi.org/10.1007/s10897-010-9316-y
Vadaparampil ST, Wideroff L, Breen N, Trapido E (2006) The impact of acculturation on awareness of genetic testing for increased cancer risk among Hispanics in the year 2000 National Health Interview Survey. Cancer Epidemiol Biomarkers Prev 15(4):618–623. https://doi.org/10.1158/1055-9965.EPI-05-0378
Vogel KJ, Atchley DP, Erlichman J, Broglio KR, Ready KJ, Valero V, Amos CI, Hortobagyi GN, Lu KH, Arun B (2007) BRCA1 and BRCA2 genetic testing in Hispanic patients: mutation prevalence and evaluation of the BRCAPRO risk assessment model. J Clin Oncol Off J Am Soc Clin Oncol 25(29):4635–4641. https://doi.org/10.1200/jco.2006.10.4703
Wideroff L, Thomas Vadaparampil S, Breen N, Croyle RT, Freedman AN (2003) Awareness of genetic testing for increased cancer risk in the year 2000 National Health Interview Survey. Public Health Genomics 6:147–156
Wiggins J, Middleton A (2013) Getting the message across: communication with diverse populations in clinical genetics. OUP USA
Acknowledgements
The authors would like to thank Carleen Gentry for her assistance with data collection, the management and staff of Whittier Street Health Center as well as the study participants for making this research possible.
Funding
The Dana-Farber Community Cancer Care Program is funded by a grant from the Kraft Family Research Fund.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no conflict of interest.
Human studies and informed consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Institutional Review Board approval was obtained and the study was granted a waiver of informed consent for retrospective review of medical records.
Animal studies
No animal studies were carried out by the authors for this article.
Rights and permissions
About this article
Cite this article
Rana, H.Q., Cochrane, S.R., Hiller, E. et al. A comparison of cancer risk assessment and testing outcomes in patients from underserved vs. tertiary care settings. J Community Genet 9, 233–241 (2018). https://doi.org/10.1007/s12687-017-0347-z
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12687-017-0347-z