Breast Cancer Research and Treatment

, Volume 136, Issue 3, pp 749–757 | Cite as

Knowledge and perceptions of familial and genetic risks for breast cancer risk in adolescent girls

  • Angela R. BradburyEmail author
  • Linda Patrick-Miller
  • Brian L. Egleston
  • Lisa A. Schwartz
  • Colleen B. Sands
  • Rebecca Shorter
  • Cynthia W. Moore
  • Lisa Tuchman
  • Paula Rauch
  • Shreya Malhotra
  • Brianne Rowan
  • Stephanie Van Decker
  • Helen Schmidheiser
  • Lisa Bealin
  • Patrick Sicilia
  • Mary B. Daly
Clinical Trial


Evidence suggests early events might modify adult breast cancer risk and many adolescents learn of familial and genetic risks for breast cancer. Little is known about how adolescent girls understand and respond to breast cancer risk. Semi-structured interviews with 11–19 year-old girls at high-risk and population-risk for breast cancer evaluated knowledge and perceptions of breast cancer risk and risk modification. Framework analysis and descriptive statistics were utilized to analyze open-ended responses. Risk group and age differences were evaluated by Fisher’s exact and McNemar’s tests. Fifty-four girls (86 % of invited), 35 high-risk (65 %), and 19 population-risk (35 %) completed interviews. The most frequently reported risk for breast cancer was family history/hereditary predisposition (66 %). Only 17 % of girls were aware of BRCA1/2 genes. The majority (76 %) of high-risk girls perceive themselves to be at increased risk for breast cancer, compared to 22 % of population-risk girls (p = 0.001). Half of girls reported that women can get breast cancer before 20-years-old. The majority believe there are things women (70 %) and girls (67 %) can do to prevent breast cancer. Mother was the most frequently reported source of information for breast cancer among both high-risk (97 %) and population-risk (89 %) girls. In this study, many high-risk girls perceive themselves to be at increased risk for breast cancer, and many girls believe that breast cancer can occur in teens. Yet, most girls believe there are things women and girls can do to prevent breast cancer. Research evaluating the impact of awareness and perceptions of breast cancer risk on psychosocial, health, and risk behaviors is needed to develop strategies to optimize responses to cancer risk.


Adolescents Breast cancer Breast cancer prevention Cancer risk assessment Perceived risk of cancer 



American Cancer Society, Mentored Research Scholar Award (MRSG 07-014-01-CPPB). Support was also provided by NIH grant P30 CA006927 and the Fox Chase Cancer Center Keystone Program in Personalized Risk and Prevention.

Conflict of interest

There are no conflicts of interest to disclose.


  1. 1.
    American Cancer Society (2010) Cancer facts & figures. Available from Accessed 25 May 2011
  2. 2.
    Antoniou AC, Easton DF (2006) Models of genetic susceptibility to breast cancer. Oncogene 25(43):5898–5905PubMedCrossRefGoogle Scholar
  3. 3.
    Nathanson KL, Weber BL (2001) “Other” breast cancer susceptibility genes: searching for more holy grail. Hum Mol Genet 10(7):715–720PubMedCrossRefGoogle Scholar
  4. 4.
    Turnbull C, Rahman N (2008) Genetic predisposition to breast cancer: past, present, and future. Annu Rev Genomics Hum Genet 9:321–345PubMedCrossRefGoogle Scholar
  5. 5.
    NCCN Guidelines, version 1. (2012) Breast cancer screening and diagnosis. Accessed 3 Oct 2012
  6. 6.
    Borry P et al (2006) Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers. Clin Genet 70(5):374–381PubMedCrossRefGoogle Scholar
  7. 7.
    Wild CP (2011) How much of a contribution do exposures experienced between conception and adolescence make to the burden of cancer in adults? Cancer Epidemiol Biomarkers Prev 20(4):580–581PubMedCrossRefGoogle Scholar
  8. 8.
    Okasha M et al (2003) Exposures in childhood, adolescence and early adulthood and breast cancer risk: a systematic review of the literature. Breast Cancer Res Treat 78(2):223–276PubMedCrossRefGoogle Scholar
  9. 9.
    Maruti SS et al (2008) A prospective study of age-specific physical activity and premenopausal breast cancer. J Natl Cancer Inst 100(10):728–737PubMedCrossRefGoogle Scholar
  10. 10.
    Colditz GA, Frazier AL (1995) Models of breast cancer show that risk is set by events of early life: prevention efforts must shift focus. Cancer Epidemiol Biomarkers Prev 4(5):567–571PubMedGoogle Scholar
  11. 11.
    Warri A et al (2008) The role of early life genistein exposures in modifying breast cancer risk. Br J Cancer 98(9):1485–1493PubMedCrossRefGoogle Scholar
  12. 12.
    Holmbeck GN (2002) A developmental perspective on adolescent health and illness: an introduction to the special issues. J Pediatr Psychol 27(5):409–416PubMedCrossRefGoogle Scholar
  13. 13.
    Cohen RY, Brownell KD, Felix MR (1990) Age and sex differences in health habits and beliefs of schoolchildren. Health Psychol 9(2):208–224PubMedCrossRefGoogle Scholar
  14. 14.
    Chassin L et al (1990) The natural history of cigarette smoking: predicting young-adult smoking outcomes from adolescent smoking patterns. Health Psychol 9(6):701–716PubMedCrossRefGoogle Scholar
  15. 15.
    Williams PG, Holmbeck GN, Greenley RN (2002) Adolescent health psychology. J Consult Clin Psychol 70(3):828–842PubMedCrossRefGoogle Scholar
  16. 16.
    Mulye TP et al (2009) Trends in adolescent and young adult health in the United States. J Adolesc Health 45(1):8–24PubMedCrossRefGoogle Scholar
  17. 17.
    Tercyak KP et al (2001) Parental communication of BRCA1/2 genetic test results to children. Patient Educ Couns 42(3):213–224PubMedCrossRefGoogle Scholar
  18. 18.
    Patenaude AF et al (2006) Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. J Clin Oncol 24(4):700–706PubMedCrossRefGoogle Scholar
  19. 19.
    Bradbury AR et al (2007) How often do BRCA mutation carriers tell their young children of the family’s risk for cancer? A study of parental disclosure of BRCA mutations to minors and young adults. J Clin Oncol 25(24):3705–3711PubMedCrossRefGoogle Scholar
  20. 20.
    Bradbury AR et al. (2012) When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response. Cancer 118(13):3417–3425Google Scholar
  21. 21.
    The early act. Available from Accessed 3 Oct 2012
  22. 22.
    Phillips L, Susan G (2009) Komen tour bus takes awareness on the go. Accessed 3 Oct 2012
  23. 23.
    Orenstein P (2010) The way we live now; think about pink. The New York Times Magazine (12 Nov 2010) p 13–14Google Scholar
  24. 24.
    Driessnack M (2009) Growing up at the intersection of the genomic era and the information age. J Pediatr Nurs 24(3):189–193PubMedCrossRefGoogle Scholar
  25. 25.
    Cappelli M et al (2005) Psychological and genetic counseling implications for adolescent daughters of mothers with breast cancer. Clin Genet 67(6):481–491PubMedCrossRefGoogle Scholar
  26. 26.
    Silk KJ et al (2006) Formative research on adolescent and adult perceptions of risk factors for breast cancer. Soc Sci Med 63(12):3124–3136PubMedCrossRefGoogle Scholar
  27. 27.
    Weiss M et al. (2009) Breast cancer fear in girls: a major “side effect” of breast cancer in loved ones and a backlash of ubiquitous media coverage. Cancer Res 69(2). doi: 10.1158/0008-5472.SABCS-5078
  28. 28.
    Bradbury AR et al (2009) Learning of your parent’s BRCA mutation during adolescence or early adulthood: a study of offspring experiences. Psycho-oncology 18(2):200–208PubMedCrossRefGoogle Scholar
  29. 29.
    Fitch MI, Abramson T (2007) Information needs of adolescents when a mother is diagnosed with breast cancer. Can Oncol Nurs J 17(1):16–25PubMedGoogle Scholar
  30. 30.
    Geller G et al. (2000) Mothers and daughters from breast cancer families: a qualitative study of their perceptions of risks and benefits associated with minor’s participation in genetic susceptibility research. J Am Med Womens Assoc 55 (5): 280–284, 293Google Scholar
  31. 31.
    Kristjanson LJ, Chalmers KI, Woodgate R (2004) Information and support needs of adolescent children of women with breast cancer. Oncol Nurs Forum 31(1):111–119PubMedCrossRefGoogle Scholar
  32. 32.
    Zahlis EH (2001) The child’s worries about the mother’s breast cancer: sources of distress in school-age children. Oncol Nurs Forum 28(6):1019–1025PubMedGoogle Scholar
  33. 33.
    Tercyak KP et al (2001) Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-oncology 10(4):336–346PubMedCrossRefGoogle Scholar
  34. 34.
    Leventhal H et al. (1997). In: Petrie KJ, Weinman JA (eds) Perceptions of health and illness: current research and applications, in illness representations: theoretical foundations. Harwood: Amsterdam, pp 19–46Google Scholar
  35. 35.
    Zimmerman RS et al (1986) The effects of health information in a worksite hypertension screening program. Health Educ Q 13:261–280PubMedCrossRefGoogle Scholar
  36. 36.
    Petrie KJ et al (2002) Changing illness perceptions after myocardial infarction: an early intervention randomized controlled trial. Psychosom Med 64(4):580–586PubMedGoogle Scholar
  37. 37.
    McAndrew LM et al (2008) Using the common sense model to design interventions for the prevention and management of chronic illness threats: from description to process. Br J Health Psychol 13(Pt 2):195–204PubMedCrossRefGoogle Scholar
  38. 38.
    Arnett JJ (2000) Emerging adulthood. A theory of development from the late teens through the twenties. Am Psychol 55(5):469–480PubMedCrossRefGoogle Scholar
  39. 39.
    Thomas AM, Peterson L, Goldstein D (1997) Problem solving and diabetes regimen adherence by children and adolescents with IDDM in social pressure situations: a reflection of normal development. J Pediatr Psychol 22(4):541–561PubMedCrossRefGoogle Scholar
  40. 40.
    Sandelowski M (2000) Combining qualitative and quantitative sampling, data collection, and analysis techniques in mixed-method studies. Res Nurs Health 23(3):246–255PubMedCrossRefGoogle Scholar
  41. 41.
    Sandelowski M (1995) Sample size in qualitative research. Res Nurs Health 18(2):179–183PubMedCrossRefGoogle Scholar
  42. 42.
    Pope C, van Royen P, Baker R (2002) Qualitative methods in research on healthcare quality. Qual Saf Health Care 11(2):148–152PubMedCrossRefGoogle Scholar
  43. 43.
    Ritchie J, Spencer L (1994). In: Bryman A, Burgess R (eds) Qualitative data analysis for applied policy research, in analysing qualitative data. Routledge, London, pp 173–194Google Scholar
  44. 44.
    Scott SE et al (2006) Patient delay in oral cancer: a qualitative study of patients’ experiences. Psycho-oncology 15(6):474–485PubMedCrossRefGoogle Scholar
  45. 45.
    Velikova G et al (2008) The clinical value of quality of life assessment in oncology practice—a qualitative study of patient and physician views. Psycho-oncology 17(7):690–698PubMedCrossRefGoogle Scholar
  46. 46.
    Husain LS et al (2008) Choices in cancer treatment: a qualitative study of the older women’s (>70 years) perspective. Psycho-oncology 17(4):410–416PubMedCrossRefGoogle Scholar
  47. 47.
    Glaser BG, Strauss AL (1967) The discovery of grounded theory. Aldine, ChicagoGoogle Scholar
  48. 48.
    Pope C, Ziebland S, Mays N (2000) Qualitative research in health care. Analysing qualitative data. BMJ 320(7227):114–116PubMedCrossRefGoogle Scholar
  49. 49.
    Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 23(4):334–340PubMedCrossRefGoogle Scholar
  50. 50.
    Crabtree BF, Miller WL (1992) Doing qualitative research. Sage, Newbury ParkGoogle Scholar
  51. 51.
    Braet C et al. (2012) Depression in early, middle and late adolescence: differential evidence for the cognitive diathesis-stress model. Clin Psychol Psychother (in press)Google Scholar
  52. 52.
    Burke W, Psaty BM (2007) Personalized medicine in the era of genomics. JAMA 298(14):1682–1684PubMedCrossRefGoogle Scholar
  53. 53.
    Khoury MJ et al (2007) The continuum of translation research in genomic medicine: how can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention? Genet Med 9(10):665–674PubMedCrossRefGoogle Scholar
  54. 54.
    Scheuner MT, Sieverding P, Shekelle PG (2008) Delivery of genomic medicine for common chronic adult diseases: a systematic review. JAMA 299(11):1320–1334PubMedCrossRefGoogle Scholar
  55. 55.
    Agurs-Collins T et al (2008) Public health genomics: translating obesity genomics research into population health benefits. Obesity (Silver Spring) 16(Suppl 3):S85–S94CrossRefGoogle Scholar
  56. 56.
    Kothari AS et al (2002) Breast carcinoma in women age 25 years or less. Cancer 94(3):606–614PubMedCrossRefGoogle Scholar
  57. 57.
    Bosland K, McCarthy K (2009) 11-Year-old breast cancer survivor. Available from: Accessed 9 Oct 2009
  58. 58.
    Kasperson RE et al (1988) The social amplification of risk: a conceptual framework. Risk Anal 8(2):177–187CrossRefGoogle Scholar
  59. 59.
    Edgar KA, Skinner TC (2003) Illness representations and coping as predictors of emotional well-being in adolescents with type 1 diabetes. J Pediatr Psychol 28(7):485–493PubMedCrossRefGoogle Scholar
  60. 60.
    Covello VT, Peters RG (2002) Women’s perceptions of the risks of age-related diseases, including breast cancer: reports from a 3-year research study. Health Commun 14(3):377–395PubMedCrossRefGoogle Scholar
  61. 61.
    Lipkus IM et al (2001) Informing women about their breast cancer risks: truth and consequences. Health Commun 13(2):205–226PubMedCrossRefGoogle Scholar
  62. 62.
    Emanuel EJ et al (2008) The Oxford textbook of clinical research ethics. Oxford University Press, USAGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2012

Authors and Affiliations

  • Angela R. Bradbury
    • 1
    • 2
    Email author
  • Linda Patrick-Miller
    • 3
    • 4
  • Brian L. Egleston
    • 5
  • Lisa A. Schwartz
    • 6
  • Colleen B. Sands
    • 1
  • Rebecca Shorter
    • 1
  • Cynthia W. Moore
    • 7
  • Lisa Tuchman
    • 8
  • Paula Rauch
    • 7
  • Shreya Malhotra
    • 9
  • Brianne Rowan
    • 9
  • Stephanie Van Decker
    • 9
  • Helen Schmidheiser
    • 9
  • Lisa Bealin
    • 9
  • Patrick Sicilia
    • 1
  • Mary B. Daly
    • 9
  1. 1.Division of Hematology-Oncology, Department of MedicineUniversity of PennsylvaniaPhiladelphiaUSA
  2. 2.Department of Medical Ethics and Health PolicyUniversity of PennsylvaniaPhiladelphiaUSA
  3. 3.Division of Hematology-Oncology, Department of MedicineThe University of ChicagoChicagoUSA
  4. 4.Center for Clinical Cancer Genetics and Global HealthThe University of ChicagoChicagoUSA
  5. 5.Biostatistics FacilityFox Chase Cancer CenterPhiladelphiaUSA
  6. 6.Division of Oncology, Department of PediatricsThe Children’s Hospital of Philadelphia and University of PennsylvaniaPhiladelphiaUSA
  7. 7.Department of Child and Adolescent PsychiatryMassachusetts General HospitalBostonUSA
  8. 8.The Division of Adolescent and Young Adult Medicine, Children’s National Medical Center, Children’s Research InstituteCenter for Clinical and Community ResearchWashingtonUSA
  9. 9.Department of Clinical GeneticsFox Chase Cancer CenterPhiladelphiaUSA

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