"you don't have to keep everything on paper": African American women's use of family health history tools

Journal of Community Genetics

Volumn 4, Issue 2, 2013, Pages 251-261

  Thompson, Tess ^a   Seo, Joann ^a   Griffith, Julia ^a   Baxter, Melanie ^b   James, Aimee ^c   Kaphingst, Kimberly A ^a,c  

^a WASHINGTON UNIVERSITY   (United States)

^b USA   (United States)

^c WASHINGTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

Cancer; Family communication; Family health history; Racial ethnic minorities

Indexed keywords

ADULT; AFRICAN AMERICAN; ARTICLE; ATTITUDE; FAMILY HISTORY; FEMALE; HEALTH BELIEF; HUMAN; INFORMATION SEEKING; INTERPERSONAL COMMUNICATION; NEOPLASM; PRIORITY JOURNAL;

EID: 84883038356     PISSN: 1868310X     EISSN: 18686001     Source Type: Journal    
DOI: 10.1007/s12687-013-0138-0     Document Type: Article

References (52)

1. Acheson L (2003) Fostering applications of genetics in primary care: what will it take? Genet Med 5(2):63-65
2. Acheson LS, Wang C, Zyzanski SJ, Lynn A, Ruffin MT, Gramling R, Rubenstein WS, O'Neill SM, Nease DE (2010) Family history and perceptions about risk and prevention for chronic diseases in primary care: a report from the Family Healthware Impact Trial. Genet Med 12(4):212-218
3. Acton R, Burst N, Casebeer L et al (2000) Knowledge, attitudes, and behaviors of Alabama's primary care physicians regarding cancer genetics. Acad Med 75(8):850-852
4. American Cancer Society (2011) Facing Disparities. http://www.cancer.org/ MyACS/Eastern/AreaHighlights/cancernynj-news-mlk-facing-disparities
5. American Cancer Society (2012) American Cancer Society Guidelines for the Early Detection of Cancer. http://www.cancer.org/Healthy/FindCancerEarly/ CancerScreeningGuidelines/american-cancer-society-guidelines-for-the-early- detection-of-cancer
6. Audrain-McGovern J, Hughes C, Patterson F (2003) Effecting behavior change: awareness of family history. Am J Prev Med 24(2):183-189
7. Beatty P, Willis G (2007) Research synthesis: the practice of cognitive interviewing. Public Opin Q 71:287-311
8. Berg AO, Baird MA, Botkin JR, Driscoll DA, Fishman PA, Guarino PD, Hiatt RA, Jarvik GP, Millon-Underwood S, Morgan TM, Mulvihill JJ, Pollin TI, Schimmel SR, Stefanek ME, Vollmer WM, Williams JK (2009) National Institutes of Health State-of-the-Science conference statement: family history and improving health. Ann Intern Med 151(12):872-877
9. Buchanan AH, Skinner CS, Rawl SM, Moser BK, Champion VL, Scott LL, Strigo TS, Bastian L (2005) Patients' interest in discussing cancer risk and risk management with primary care physicians. Patient Educ Couns 57:77-87
10. Butty J, Richardson F, Mouton C, Royal C, Green R, Munroe K (2012) Evaluation findings from genetics and family health history community-based workshops for African Americans. J Community Genet 3:1-12
11. Carmona RH, Wattendorf DJ (2005) Personalizing prevention: the U.S. Surgeon General's family history initiative. Am Fam Physician 71(1):36-39
12. Chew LD, Griffin JM, Partin MR, Noorbaloochi S, Grill JP, Snyder A, Bradley KA, Nugent SM, Baines AD, VanRyn M (2008) Validation of screening questions for limited health literacy in a large VA outpatient population. J Gen Intern Med 23(5):561-566
13. Clarke AJ (2009) Musings on genome medicine: the value of family history. Genome Medicine 1:75
14. Coffey A, Atkinson P (1996) Making sense of qualitative data: Complementary research strategies. Sage Publications, Thousand Oaks, CA
15. Cohn W, Ropka M, Pelletier S, Barrett J, Kinzie M, Harrison M, Liu Z, Miesfeldt S, Tucker A, Worrall B, Gibson J, Mullins I, Elward K, Franko J, Guterbock T, Knaus (2010) Health Heritage, a web-based tool for the collection and assessment of family health history: initial user experience and analytic validity. Public Health Genomics 13(7-8):477-491
16. Cree RA, Lynch J, Au MG, Myers MF (2009) Decisions to seek healthcare based on family health history among urban Appalachian women. J Genet Couns 18:534-550
17. Dunlop K, Barlow-Stewart K (2009) Start the conversation: the New South Wales (Australia) Family Health History Campaign. Public Health Genomics 13(5):301-309
18. Feero WG, Bigley MB, Brinner KM (2008) New standards and enhanced utility for family health history information in the electronic health record: an update from the American Health Information Community's Family Health History Multi-Stakeholder Workgroup. J Am Med Inform Assoc 15(6):723-728
19. Fuller M, Myers M, Webb T, Tabangin M, Prows C (2010) Primary care providers' responses to patient-generated family history. J Genet Couns 19(1):84-96
20. Genetic Alliance (2009) Programs. http://www.geneticalliance.org/ programs. Accessed January 29, 2009
21. Grover S, Stoffel EM, Bussone L, Tschoegl E, Syngal S (2004) Physician assessment of family cancer history and referral for genetic evaluation in colorectal cancer patients. Clin Gastroenterol Hepatol 2:813-819
22. Guttmacher AE, Collins FS, Carmona RH (2004) The family history - More important than ever. N Engl J Med 351(22):2333-2336
23. Hampel H, Sweet K, Westman JA, Offit K, Eng C (2004) Referral for cancer genetics consultation: a review and compilation of risk assessment criteria. J Med Genet 41:81-91
24. Kaphingst K, Goodman M, Pandya C, Garg P, Stafford J, Lachance C (2012) Factors affecting frequency of communication about family health history with family members and doctors in a medically underserved population. Patient Educ Couns 88(2):291-297
25. Kelly K, Sweet K (2007) In search of a familial cancer risk assessment tool. Clin Genet 71:76-83
26. Miles M (1983) Qualitative data as an attractive nuisance: The problem of analysis. In: Maanen J (ed) Qualitative Methodology. Sage Publications, New Dehli
27. Miles M, Huberman A (1994) Qualitative data analysis: An expanded sourcebook. Sage Publications, Thousand Oaks, CA
28. Murray MF, Holbrook KJ, Giovanni MA (2007) Brigham and Women's Hospital Family History Project. Final Report on Phase 1: A Hospital Employee-Focused Family History Project. Brigham and Women's Hospital and Harvard Medical School. http://www.genome.gov/Pages/About/OD/ECIB/FHDemonstrationProjectReports/ BWHFinalReport.pdf. Accessed September 28, 2012
29. National Human Genome Research Institute (2011) Family History Demonstration Projects. http://www.genome.gov/27026369 Accessed September 27, 2012
30. O'Leary J, Edelson VT, Gardner NR, Gepp AJ, Kyler P, Moore PJ, O'Quinn K, Petruccio CL, Terry SF, Bowen D (2009) Community empowerment for public health: the role of family health history. Paper presented at the American Public Health Association annual meeting. Philadelphia, PA, November 9, 2009
31. O'Neill SM, Rubenstein WS, Wang C, Yoon PW, Acheson LS, Rothrock N, Starzyk EJ, Beaumont JL, Galliher JM, Ruffin MT (2009) Familial risk for common diseases in primary care: the family healthware impact trial. Am J Prev Med 36(6):506-514
32. Orom H, Coté ML, González HM, Underwood W, Schwartz AG (2007) Family history of cancer: Is it an accurate indicator of cancer risk in the immigrant population? Am Cancer Soc 112(2):399-406
33. Petruccio C, Mills Shaw KR, Boughman J, Fernandez C, Harlow I, Kruesi M, Kyler P, Lloyd-Puryear MA, O'Leary J, Skillman A, Terry S, McKain F (2008) Health choices through family history: a community approach to family history awareness. Community Genet 11:343-351
34. Qureshi N, Bethea J, Modell B, Brennan P, Papageorgiou A, Raeburn S, Hapgood R, Modell M (2005) Collecting genetic information in primary care: evaluating a new family history tool. Fam Pract Adv Access 22(6):663-669
35. Qureshi N, Carroll JC, Wilson B, Santaguida P, Allanson J, Brouwers M, Raina P (2009) The current state of cancer family history collection tools in primary care: a systematic review. Genet Med 11(7):495-506
36. Reid G, Walter F, Brisbane J, Emery J (2009) Family history questionnaires designed for clinical use: a systematic review. Public Health Genomics 12:73-83
37. Rich EC, Burke W, Heaton CJ, Haga S, Pinsky L, Short P, Acheson L (2004) Reconsidering the family history in primary care. J Gen Intern Med 19(3):273-280
38. Sandelowski M (1995) Qualitative analysis: what it is and how to begin. Res Nurs Health 18:371-375
39. Scheuner MT, Wang S-J, Raffel LJ, Larabell SK, Rotter JI (1997) Family history: a comprehensive genetic risk assessment method for the chronic conditions of adulthood. Am J Med Genet 71(3):315-324
40. Schroy I, Paul S, Barrison AF, Ling BS, Wilson S, Geller AC (2002) Family history and colorectal cancer screening: a survey of physician knowledge and practice patterns. Am J Gastroenterol 97(4):1031-1036
41. U.S. Surgeon General's Office (2011) My Family Health Portrait. https://familyhistory.hhs.gov/. Accessed September 20, 2012
42. Sweet K, Bradley T, Westman JA (2002) Identification and referral of families at high risk for cancer susceptibility. J Clin Oncol 20(2):528-537
43. Tyler CV, Snyder CW (2006) Cancer risk assessment: examining the family physician's role. J Am Board Fam Med 19:468-477
44. Valdez R, Yoon PW, Qureshi N, Green RF, Khoury MJ (2010) Family history in public health practice: a genomic tool for disease prevention and health promotion. Annu Rev Public Health 31:69-87
45. Vernon SW, Meissner H, Klabunde C, Rimer BK, Ahnen DJ, Bastani R, Mandelson MT, Nadel MR, Sheinfeld-Gorin S, Zapka J (2004) Measures for ascertaining use of colorectal cancer screening in behavioral, health services, and epidemiologic research. Cancer Epidemiol Biomark Prev 13:898-905
46. Wallace JP, Baugh C, Cornett S, Hood B, Prows CA, Ryan N, Warren NS, Au MG, Brown MK, Glandorf K, Jarrell JJ, Nolan TL, Sorrell J, Walters J, Myers MF (2009) A family history demonstration project among women in an urban Appalachian community. Prog Community Health Partnerships 3(2):155-163
47. Wang C, Gallo RE, Fleisher L, Miller SM (2011) Literacy assessment of family health history tools for public health prevention. Public Health Genomics 14(4-5):222-237
48. Wideroff L, Garceau AO, Greene MH, Dunn M, McNeel T, Mai P, Willis G, Gonsalves L, Martin M, Graubard BI (2010) Coherence and completeness of population-based family cancer reports. Cancer Epidemiol Biomarkers Prev 19(3):799-810
49. Willis G (2005) Cognitive interviewing: A tool for improving questionnaire design. Sage Publications, Thousand Oaks, CA
50. Yoon PW, Scheuner MT, Peterson-Oehlke KL, Gwinn M, Faucett A, Khoury MJ (2002) Can family history be used as a tool for public health and preventive medicine? Genet Med 4(4):304-310
51. Yoon PW, Scheuner MT, Gwinn M, Khoury MJ, Jorgensen C, Hariri S, Lyn S (2004) Awareness of family history as a risk factor for disease - United States, 2004. Morb Mortal Wkly Rep 53(44):1044-1047
52. Yoon PW, Scheuner MT, Jorgensen C, Khoury MJ (2009) Developing Family Healthware, a family history screening tool to prevent common chronic diseases. Prev Chronic Dis 6(1):1-11