Cancer Causes & Control

, Volume 19, Issue 5, pp 469–479

Accuracy of self-reported family history of cancer in a large case–control study of ovarian cancer

  • Marie Soegaard
  • Allan Jensen
  • Kirsten Frederiksen
  • Estrid Høgdall
  • Claus Høgdall
  • Jan Blaakær
  • Susanne K. Kjaer
Original Paper

Abstract

Objective

To evaluate the reliability of self-reported family history of cancer in first-degree female relatives and to examine possible determinants of accurate reporting.

Methods

Women with ovarian cancer and controls were recruited between 1995 and 1999 and interviewed. The study comprised 579 cases and 1,564 controls with 6,265 first-degree female relatives. Self-reported familial cancer diagnoses were validated from registry data. Sensitivity, specificity, and kappa were calculated, and possible determinants were examined by logistic regression.

Results

The sensitivity of self-reporting ranged from 0.78 to 0.90 for all cancers but was lower for self-reporting of most site-specific cancers, ranging from 0.29 to 0.94. The specificity of self-reporting ranged from 0.91 to 0.99 for cancer in general and from 0.99 to 1.00 for site-specific cancers. Type of relative, age at interview, and length of education influenced the sensitivity and specificity significantly. The odds ratio for ovarian cancer was higher when based on registry data than on self-reported data and was significant (OR = 2.58 vs. 1.56).

Conclusions

Cancer diagnoses in first-degree relatives are not always accurately reported by patients with ovarian cancer or by controls. The results indicate that studies of associations with family cancer history should validate self-reported family cancer diagnoses as carefully as possible.

Keywords

Hereditary cancer Family cancer history Validation Ovarian cancer Hereditary breast and ovarian cancer 

References

  1. 1.
    Kerber RA, Slattery ML (1997) Comparison of self-reported and database-linked family history of cancer data in a case-control study. Am J Epidemiol 146:244–248PubMedGoogle Scholar
  2. 2.
    Mitchell RJ, Brewster D, Campbell H et al (2004) Accuracy of reporting of family history of colorectal cancer. Gut 53:291–295PubMedCrossRefGoogle Scholar
  3. 3.
    Parent ME, Ghadirian P, Lacroix A, Perret C (1995) Accuracy of reports of familial breast cancer in a case-control series. Epidemiology 6:184–186PubMedCrossRefGoogle Scholar
  4. 4.
    Sijmons RH, Boonstra AE, Reefhuis J et al (2000) Accuracy of family history of cancer: clinical genetic implications. Eur J Hum Genet 8:181–186PubMedCrossRefGoogle Scholar
  5. 5.
    Ziogas A, Anton-Culver H (2003) Validation of family history data in cancer family registries. Am J Prev Med 24:190–198PubMedCrossRefGoogle Scholar
  6. 6.
    Love RR, Evans AM, Josten DM (1985) The accuracy of patient reports of a family history of cancer. J Chronic Dis 38:289–293PubMedCrossRefGoogle Scholar
  7. 7.
    Douglas FS, O’Dair LC, Robinson M, Evans DG, Lynch SA (1999) The accuracy of diagnoses as reported in families with cancer: a retrospective study. J Med Genet 36:309–312PubMedGoogle Scholar
  8. 8.
    Glanz K, Grove J, Le ML, Gotay C (1999) Underreporting of family history of colon cancer: correlates and implications. Cancer Epidemiol Biomarkers Prev 8:635–639PubMedGoogle Scholar
  9. 9.
    Ivanovich J, Babb S, Goodfellow P et al (2002) Evaluation of the family history collection process and the accuracy of cancer reporting among a series of women with endometrial cancer. Clin Cancer Res 8:1849–1856PubMedGoogle Scholar
  10. 10.
    King TM, Tong L, Pack RJ, Spencer C, Amos CI (2002) Accuracy of family history of cancer as reported by men with prostate cancer. Urology 59:546–550PubMedCrossRefGoogle Scholar
  11. 11.
    Aitken JF, Youl P, Green A, MacLennan R, Martin NG (1996) Accuracy of case-reported family history of melanoma in Queensland, Australia. Melanoma Res 6:313–317PubMedCrossRefGoogle Scholar
  12. 12.
    Chang ET, Smedby KE, Hjalgrim H, Glimelius B, Adami HO (2006) Reliability of self-reported family history of cancer in a large case–control study of lymphoma. J Natl Cancer Inst 98:61–68PubMedCrossRefGoogle Scholar
  13. 13.
    Garbers V, Toniolo PG, Taioli E (2001) Changes in self-reported family history of breast cancer with change in case–control status. Eur J Epidemiol 17:517–520PubMedCrossRefGoogle Scholar
  14. 14.
    Koch M, Hill GB (1987) Problems in establishing accurate family history in patients with ovarian cancer of epithelial origin. Cancer Detect Prev 10:279–283PubMedGoogle Scholar
  15. 15.
    Aitken J, Bain C, Ward M, Siskind V, MacLennan R (1995) How accurate is self-reported family history of colorectal cancer? Am J Epidemiol 141:863–871PubMedGoogle Scholar
  16. 16.
    Rauscher GH, Sandler DP (2005) Validating cancer histories in deceased relatives. Epidemiology 16:262–265PubMedCrossRefGoogle Scholar
  17. 17.
    Amos CI, Struewing JP (1993) Genetic epidemiology of epithelial ovarian cancer. Cancer 71(2 Suppl):566–572PubMedGoogle Scholar
  18. 18.
    Stratton JF, Pharoah P, Smith SK, Easton D, Ponder BA (1998) A systematic review and meta-analysis of family history and risk of ovarian cancer. Br J Obstet Gynaecol 105:493–499PubMedGoogle Scholar
  19. 19.
    Gayther SA, Russell P, Harrington P, Antoniou AC, Easton DF, Ponder BA (1999) The contribution of germline BRCA1 and BRCA2 mutations to familial ovarian cancer: no evidence for other ovarian cancer-susceptibility genes. Am J Hum Genet 65:1021–1029PubMedCrossRefGoogle Scholar
  20. 20.
    Ford D, Easton DF, Stratton M et al (1998) Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. Am J Hum Genet 62:676–689PubMedCrossRefGoogle Scholar
  21. 21.
    Glud E, Kjaer SK, Thomsen BL et al (2004) Hormone therapy and the impact of estrogen intake on the risk of ovarian cancer. Arch Intern Med 164:2253–2259PubMedCrossRefGoogle Scholar
  22. 22.
    Osterlind A, Jensen OM (1985) [Evaluation of cancer registration in Denmark in 1977. Preliminary evaluation of cancer registration by the Cancer Register and the National Patient Register]. Ugeskr Laeger 147:2483–2488PubMedGoogle Scholar
  23. 23.
    Storm HH (1988) Completeness of cancer registration in Denmark 1943–1966 and efficacy of record linkage procedures. Int J Epidemiol 17:44–49PubMedCrossRefGoogle Scholar
  24. 24.
    World Health Organization (1955) Report of the International Conference for the Seventh Revision of the International Lists of Diseases and Causes of Death, GenevaGoogle Scholar
  25. 25.
    Rothman KJ (2002) Epidemiology. An introduction. Oxford University Press: Oxford, pp 98–101Google Scholar
  26. 26.
    Altman DG (1991) Practical statistics for medical research. Chapman & Hall, pp. 404–408Google Scholar
  27. 27.
    Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33(1):159–174PubMedCrossRefGoogle Scholar
  28. 28.
    Soegaard M, Jensen A, Hogdall E, et al (2007) Different risk factor profiles for mucinous and nonmucinous ovarian cancer: results from the Danish MALOVA Study. Cancer Epidemiol Biomarkers Prev 16:1160–1166PubMedCrossRefGoogle Scholar
  29. 29.
    Murff HJ, Spigel DR, Syngal S (2004) Does this patient have a family history of cancer? An evidence-based analysis of the accuracy of family cancer history. JAMA 292:1480–1489PubMedCrossRefGoogle Scholar
  30. 30.
    Parent ME, Ghadirian P, Lacroix A, Perret C (1997) The reliability of recollections of family history: implications for the medical provider. J Cancer Educ 12:114–120PubMedGoogle Scholar
  31. 31.
    Risch HA, McLaughlin JR, Cole DE, et al (2001) Prevalence and penetrance of germline BRCA1 and BRCA2 mutations in a population series of 649 women with ovarian cancer. Am J Hum Genet 68:700–710PubMedCrossRefGoogle Scholar
  32. 32.
    Boyd J, Rubin SC (1997) Hereditary ovarian cancer: molecular genetics and clinical implications. Gynecol Oncol 64:196–206PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2008

Authors and Affiliations

  • Marie Soegaard
    • 1
  • Allan Jensen
    • 1
  • Kirsten Frederiksen
    • 1
  • Estrid Høgdall
    • 1
  • Claus Høgdall
    • 2
  • Jan Blaakær
    • 3
  • Susanne K. Kjaer
    • 1
    • 2
  1. 1.Institute of Cancer EpidemiologyDanish Cancer SocietyCopenhagenDenmark
  2. 2.The Gynaecologic ClinicThe Juliane Marie Centre, RigshospitaletCopenhagenDenmark
  3. 3.Department of Gynaecology and ObstetricsAarhus University HospitalSkejbyDenmark

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