Familial Cancer

, Volume 11, Issue 1, pp 27–32

Self-reported mammography use following BRCA1/2 genetic testing may be overestimated

  • Geneviève Larouche
  • Karine Bouchard
  • Jocelyne Chiquette
  • Christine Desbiens
  • Jacques Simard
  • Michel Dorval
Short Communication

Abstract

Adherence to mammographic screening recommendations following BRCA1/2 testing is generally assessed through self-reports. However, the validity of self-reported mammography by women who had undergone BRCA1/2 genetic testing is still unknown. This study aimed to assess the validity of self-reported mammography use in the past 12 months among women who had undergone BRCA1/2 testing. Using a self-administered questionnaire, 307 women who never had cancer were asked 1 year following BRCA1/2 test result disclosure whether they undergone a mammography in the past 12 months. For each participant, this information was compared to that provided by the Quebec Health Insurance Board administrative data set for mammography claims during the same period, here considered as the gold standard. Sensitivity (Sn), specificity (Sp), predictive values, and Cohen’s kappa (κ) were calculated. The robustness of these estimates was assessed using sensitivity analysis in which we varied the administrative data time lapses up to 18 months. Overall, the agreement between self-reports and administrative data was 88% (κ = 0.74). Among the 180 participants who had a mammography according to the administrative data, 172 adequately reported this information (Sn = 96%). Sp was moderate (76%), meaning that 24% of those who did not have a mammography reported one. Extending the time lapses to 18 months increased the Sp substantially (Sp = 90%). Self-report overestimates the use of mammography, mainly because women tend to minimize the elapsed time since their last mammography. Self-reports should be used cautiously to assess adherence to mammographic screening following BRCA1/2 testing.

Keywords

Genes BRCA 1 Genes BRCA 2 Mammography Self-report Validity 

References

  1. 1.
    Berliner JL, Fay AM (2007) Practice Issues Subcommitee of the National Society of Genetic Counselors’ Familial Cancer Risk Counseling Special Interest Group. Risk assessment and genetic counseling for hereditary breast and ovarian cancer: recommendations of the national society of genetic counselors. J Genet Couns 16(3):241–260PubMedCrossRefGoogle Scholar
  2. 2.
    Burke W, Daly M, Garber J, Botkin J, Kahn MJ, Lynch P, McTiernan A, Offit K, Perlman J, Petersen G, Thomson E, Varricchio C (1997) Recommendations for follow-up care of individuals with an inherited predisposition to cancer. II. BRCA1 and BRCA2. Cancer Genetics Studies Consortium. JAMA 277(12):997–1003Google Scholar
  3. 3.
    Daly MB, Axilbund JE, Bryant E, Buys S, Eng C, Friedman S, Esserman LJ, Farrell CD, Ford JM, Garber JE, Jeter JM, Kohlmann W, Lynch PM, Marcom PK, Nabell LM, Offit K, Osarogiagbon RU, Pasche B, Reiser G, Sutphen R, Weitzel JN (2006) Genetic/familial high-risk assessment: breast and ovarian clinical practice guidelines in oncology. J Natl Compr Canc Netw 4(2):156–176PubMedGoogle Scholar
  4. 4.
    Eisinger F, Bressac B, Castaigne D, Cottu P-H, Lansac J, Lefranc J-P, Lesur A, Noguès C, Pierret J, Puy-Pernias S, Sobol H, Tardivon A, Tristant H, Villet R (2004) Identification and management of hereditary predisposition to cancer of the breast and the ovary (update 2004). Bull Cancer 91(3):219–237PubMedGoogle Scholar
  5. 5.
    Horsman D, Wilson BJ, Avard D, Meschino WS, Kim Sing C, Plante M, Eisen A, Howley HE, Simard J (2007) Clinical management recommendations for surveillance and risk-reduction strategies for hereditary breast and ovarian cancer among individuals carrying a deleterious BRCA1 or BRCA2 mutation. J Obstet Gynaecol Can 29(1):45–60PubMedGoogle Scholar
  6. 6.
    McIntosh A, Shaw C, Evans G, Turnbull N, Bahar N, Barclay M, Easton D, Emery J, Gray J, Halpin J, Hopwood P, McKay J, Sheppard C, Sibbering M, Watson W, Wailoo A, Hutchinson A (2004) Clinical guidelines and evidence review for the classification and care of women at risk of familial breast cancer. National Collaborating Centre for Primary Care/University of Sheffield, LondonGoogle Scholar
  7. 7.
    Claes E, Evers-Kiebooms G, Decruyenaere M, Denayer L, Boogaerts A, Philippe K, Legius E (2005) Surveillance behavior and prophylactic surgery after predictive testing for hereditary breast/ovarian cancer. Behav Med 31(3):93–105PubMedCrossRefGoogle Scholar
  8. 8.
    Dorval M, Nogues C, Berthet P, Chiquette J, Gauthier-Villars M, Lasset C, Picard C, Plante M, Simard J, Julian-Reynier C (2011) Breast and ovarian cancer screening of non-carriers from BRCA1/2 mutation-positive families: 2-year follow-up of cohorts from France and Quebec. Eur J Hum Genet 19(5):494–499PubMedCrossRefGoogle Scholar
  9. 9.
    Wainberg S, Husted J (2004) Utilization of screening and preventive surgery among unaffected carriers of a BRCA1 or BRCA2 gene mutation. Cancer Epidemiol Biomarkers Prev 13(12):1989–1995PubMedGoogle Scholar
  10. 10.
    Pijpe A, Mulder RL, Manders P, HEBON, van Leeuwen FE, Rookus MA (2011) Validation study suggested no differential misclassification of self-reported mammography history in BRCA1/2 mutation carriers. J Clin Epidemiol. doi:10.1016/j.jclinepi.2011.04.005
  11. 11.
    Howard M, Agarwal G, Lytwyn A (2009) Accuracy of self-reports of Pap and mammography screening compared to medical record: a meta-analysis. Cancer Causes Control 20(1):1–13PubMedCrossRefGoogle Scholar
  12. 12.
    Newell SA, Girgis A, Sanson-Fisher RW, Savolainen NJ (1999) The accuracy of self-reported health behaviors and risk factors relating to cancer and cardiovascular disease in the general population: a critical review. Am J Prev Med 17(3):211–229PubMedCrossRefGoogle Scholar
  13. 13.
    Cronin KA, Miglioretti DL, Krapcho M, Yu B, Geller BM, Carney PA, Onega T, Feuer EJ, Breen N, Ballard-Barbash R (2009) Bias associated with self-report of prior screening mammography. Cancer Epidemiol Biomarkers Prev 18(6):1699–1705PubMedCrossRefGoogle Scholar
  14. 14.
    Rauscher GH, Johnson TP, Cho YI, Walk JA (2008) Accuracy of self-reported cancer-screening histories: a meta-analysis. Cancer Epidemiol Biomarkers Prev 17(4):748–757PubMedCrossRefGoogle Scholar
  15. 15.
    Baron-Epel O, Friedman N, Lernau O (2008) Validity of self-reported mammography in a multicultural population in Israel. Prev Med 46(6):489–491PubMedCrossRefGoogle Scholar
  16. 16.
    Caplan LS, Mandelson MT, Anderson LA (2003) Validity of self-reported mammography: examining recall and covariates among older women in a Health Maintenance Organization. Am J Epidemiol 157(3):267–272PubMedCrossRefGoogle Scholar
  17. 17.
    Dorval M, Bouchard K, Maunsell E, Plante M, Chiquette J, Camden S, Dugas MJ, Simard J (2008) Health behaviors and psychological distress in women initiating BRCA1/2 genetic testing: comparison with control population. J Genet Couns 17(4):314–326PubMedCrossRefGoogle Scholar
  18. 18.
    Dorval M, Gauthier G, Maunsell E, Dugas MJ, Rouleau I, Chiquette J, Plante M, Laframboise R, Gaudet M, Bridge PJ, Simard J (2005) No evidence of false reassurance among women with an inconclusive BRCA1/2 genetic test result. Cancer Epidemiol Biomarkers Prev 14(12):2862–2867PubMedCrossRefGoogle Scholar
  19. 19.
    Simard J, Dumont M, Moisan AM, Gaborieau V, Malouin H, Durocher F, Chiquette J, Plante M, Avard D, Bessette P, Brousseau C, Dorval M, Godard B, Houde L, Joly Y, Lajoie MA, Leblanc G, Lepine J, Lesperance B, Vezina H, Parboosingh J, Pichette R, Provencher L, Rheaume J, Sinnett D, Samson C, Simard JC, Tranchant M, Voyer P, Easton D, Tavtigian SV, Knoppers BM, Laframboise R, Bridge P, Goldgar D (2007) Evaluation of BRCA1 and BRCA2 mutation prevalence, risk prediction models and a multistep testing approach in French-Canadian families with high risk of breast and ovarian cancer. J Med Genet 44(2):107–121PubMedCrossRefGoogle Scholar
  20. 20.
    Daveluy C, Pica L, Audet N, Courtemanche R, Lapointe F et al (2000) Enquête sociale et de santé 1998, 2nd edn. Institut de la statistique du Québec, QuébecGoogle Scholar
  21. 21.
    Horowitz M, Wilner N, Alvarez W (1979) Impact of event scale: a measure of subjective stress. Psychosom Med 41(3):209–218PubMedGoogle Scholar
  22. 22.
    Lapointe J, Abdous B, Camden S, Bouchard K, Goldgar D, Simard J, Dorval M (2011) Influence of the family cluster effect on psychosocial variables in families undergoing BRCA1/2 genetic testing for cancer susceptibility. Psychooncology Epud 2011 mar2. Pubmed PMID 21370312:1885–1892. doi:10.1002/pon.1936 Google Scholar
  23. 23.
    Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero A, Bonney G, Gold K, Trock B, Main D, Lynch J, Fulmore C, Snyder C, Lemon SJ, Conway T, Tonin P, Lenoir G, Lynch H (1996) BRCA1 testing in families with hereditary breast-ovarian cancer: a prospective study of patient decision making and outcomes. JAMA 275(24):1885–1892PubMedCrossRefGoogle Scholar
  24. 24.
    Lumley T, Kronmal R, Ma S (2006) Relative risks regression in medical research: Models, contrasts, estimators and algorithms. UW biostatistics working paper series. University of Washington paper 293, pp 1–24Google Scholar
  25. 25.
    Statistical Analysis System version 9.2. Cary (N-C): The SAS InstituteGoogle Scholar
  26. 26.
    Caplan LS, McQueen DV, Qualters JR, Leff M, Garrett C, Calonge N (2003) Validity of women’s self-reports of cancer screening test utilization in a managed care population. Cancer Epidemiol Biomarkers Prev 12(11 Pt 1):1182–1187PubMedGoogle Scholar
  27. 27.
    Kester JD, Benjamin AS, Castel AD, Craik FIM (2002) Memory in elderly people. In: Baddeley AD, Kopelman MD, Wilson BA (eds) The handbook of memory disorders. Wiley, ChichesterGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • Geneviève Larouche
    • 1
    • 2
  • Karine Bouchard
    • 2
  • Jocelyne Chiquette
    • 2
    • 3
    • 4
  • Christine Desbiens
    • 2
    • 3
    • 4
  • Jacques Simard
    • 4
    • 5
  • Michel Dorval
    • 1
    • 2
    • 3
  1. 1.Faculté de pharmacieUniversité LavalQuebecCanada
  2. 2.Unité de recherche en santé des populations, Centre de recherche FRSQ du Centre hospitalier affilié universitaire de QuébecQuebecCanada
  3. 3.Centre des maladies du sein Deschênes-FabiaQuebecCanada
  4. 4.Faculté de médecineUniversité LavalQuebecCanada
  5. 5.Laboratoire de génomique des cancers, Centre de recherche du CHUL, CHUQQuebecCanada

Personalised recommendations