Skip to main content

Advertisement

Log in

Predictors of participation in clinical and psychosocial follow-up of the kConFab breast cancer family cohort

  • Published:
Familial Cancer Aims and scope Submit manuscript

Abstract

Introduction : Prospective collection of epidemiological, psychosocial and outcome data in large breast cancer family cohorts should provide less biased data than retrospective studies regarding penetrance of breast cancer and modifiers of genetic risk. Methods: The Kathleen Cuningham Foundation for Research into Breast Cancer (kConFab) recently commenced 3-yearly follow-up on over 750 families with multiple cases of breast cancer. Clinical follow-up was by mailed self-report questionnaire to all participants, while psychosocial follow-up was only of unaffected women and consisted of two components: a mailed questionnaire and an interview regarding stressful life events. Results: To date, 1928 of 2748 (70%) participants returned the clinical follow-up questionnaire (10% opted out, 16% were non-responders, and 4% were not contactable). Of the unaffected females who returned the clinical follow-up questionnaire, 91% participated in the psychosocial follow-up. In multivariate analyses, sex, personal cancer status, marital status, age and educational status were independent predictors of response to the clinical follow-up questionnaire, and number of female children, age, and family history of breast cancer were independent predictors of response to the psychosocial follow-up. Conclusions: A first round of 3-yearly clinical and psychosocial follow-up using a mailed questionnaire was feasible in this cohort. High response rates were achieved by employing intensive tracing and reminder strategies. The predictors of response for the clinical and psychosocial follow-up components of this study should be considered in designing similar follow-up strategies for other family cancer cohorts.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. P Pharoah N Day S Duffy et al. (1997) ArticleTitleFamily history and the risk of breast cancer: A systematic review and meta-analysis Int J Cancer 71 800–809

    Google Scholar 

  2. Y Miki J Swensen D Shattuck-Eidens et al. (1994) ArticleTitleA strong candidate for the breast and ovarian cancer susceptibility gene BRCA1 Science 266 66–71 Occurrence Handle1:CAS:528:DyaK2MXhtF2ns70%3D Occurrence Handle7545954

    CAS  PubMed  Google Scholar 

  3. R Wooster G Bignell J Lancaster et al. (1995) ArticleTitleIdentification of the breast cancer susceptibility gene BRCA2 Nature 378 789–2 Occurrence Handle10.1038/378789a0 Occurrence Handle1:CAS:528:DyaK28XltFWi Occurrence Handle8524414

    Article  CAS  PubMed  Google Scholar 

  4. D Malkin FP Li LC Strong et al. (1990) ArticleTitleetal. Germ line p53 mutations in a familial syndrome of breast cancer, sarcomas, and other neoplasms Science 250 1233–1238 Occurrence Handle1:CAS:528:DyaK3MXjslSisw%3D%3D Occurrence Handle1978757

    CAS  PubMed  Google Scholar 

  5. J Li C Yen D Liaw K Podsypanina et al. (1997) ArticleTitlePTEN, a putative protein tyrosine phosphatase gene mutated in human brain, breast, and prostate cancer Science 275 1943–1947 Occurrence Handle10.1126/science.275.5308.1943 Occurrence Handle1:CAS:528:DyaK2sXit1Wgtbk%3D Occurrence Handle9072974

    Article  CAS  PubMed  Google Scholar 

  6. CL Scott MA Jenkins MC Southey et al. (2003) ArticleTitleAverage age-specific risk of breast cancer associated with germline mutations in BRCA1 and BRCA2 estimated from families attending Australian family cancer clinics Hum Genet 112 542–551 Occurrence Handle1:CAS:528:DC%2BD3sXivVOgtrg%3D Occurrence Handle12601471

    CAS  PubMed  Google Scholar 

  7. DF Easton DT Bishop D Ford GP. Crockford (1993) ArticleTitleGenetic linkage analysis in familial breast and ovarian cancer: results from 214 families. The Breast Cancer Linkage Consortium Am J Hum Genet 52 678–701 Occurrence Handle1:CAS:528:DyaK2cXhtVemurs%3D Occurrence Handle8460634

    CAS  PubMed  Google Scholar 

  8. D Ford DF Easton M Stratton et al. (1998) ArticleTitleGenetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium Am J Hum Genet 62 676–689 Occurrence Handle10.1086/301749 Occurrence Handle1:CAS:528:DyaK1MXlvFeh Occurrence Handle9497246

    Article  CAS  PubMed  Google Scholar 

  9. SA Narod MP Dube J Klijn et al. (2002) ArticleTitleOral contraceptives and the risk of breast cancer in BRCA1 and BRCA2 mutation carriers J Natl Cancer Inst 94 1773–1779 Occurrence Handle1:CAS:528:DC%2BD38XptlOitLo%3D Occurrence Handle12464649

    CAS  PubMed  Google Scholar 

  10. SA Narod JS Brunet P Ghadirian et al. (2000) ArticleTitleTamoxifen and risk of contralateral breast cancer in BRCA1 and BRCA2 mutation carriers: A case-control study Lancet 356 1876–1881 Occurrence Handle10.1016/S0140-6736(00)03258-X Occurrence Handle1:CAS:528:DC%2BD3cXovFWjsL8%3D Occurrence Handle11130383

    Article  CAS  PubMed  Google Scholar 

  11. H Jernstrom C Lerman P Ghadirian et al. (1999) ArticleTitlePregnancy and risk of early breast cancer in carriers of BRCA1 and BRCA2 Lancet 354 1846–1850 Occurrence Handle10.1016/S0140-6736(99)04336-6 Occurrence Handle1:STN:280:DC%2BD3c%2FkvFCitw%3D%3D Occurrence Handle10584720

    Article  CAS  PubMed  Google Scholar 

  12. TR Rebbeck HT Lynch SL Neuhausen et al. (2002) ArticleTitleProphylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations New Engl J Med 346 1616–1622 Occurrence Handle10.1056/NEJMoa012158 Occurrence Handle12023993

    Article  PubMed  Google Scholar 

  13. HM Klaren LJ van’t Veer FE Leeuwen Particlevan MA Rookus (2003) ArticleTitlePotential for Bias in Studies on Efficacy of Prophylactic Surgery for BRCA1 and BRCA2 Mutation J Natl Cancer Inst 95 941–947 Occurrence Handle12837830

    PubMed  Google Scholar 

  14. BA Mincey (2003) ArticleTitleGenetics and the management of women at high risk for breast cancer Oncologist 8 466–473 Occurrence Handle10.1634/theoncologist.8-5-466 Occurrence Handle14530500

    Article  PubMed  Google Scholar 

  15. The Kathleen Cuningham Consortium for Research into Familial Breast Cancer. http://www.kconfab.org

  16. RH Osborne JL Hopper JA Kirk et al. (2000) ArticleTitlekConFab: a research resource of Australasian breast cancer families. Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer Med J Aust 172 463–534 Occurrence Handle1:STN:280:DC%2BD3czivVKgsQ%3D%3D Occurrence Handle10870547

    CAS  PubMed  Google Scholar 

  17. GW Brown TO. Harris (1978) Social Origins of Depression: A Study of Psychiatric Disorder in Women Tavistock London

    Google Scholar 

  18. G Brown T Harris (1989) Life Events and Illness Guildford Press New York 320–324

    Google Scholar 

  19. AJM Van Loon M Tijhuis HSJ Picavet et al. (2003) ArticleTitleSurvey non-response in the Netherlands: effects on prevalence estimates and associations Ann Epidemiol 13 105–110 Occurrence Handle10.1016/S1047-2797(02)00257-0 Occurrence Handle12559669

    Article  PubMed  Google Scholar 

  20. M Cotterchio G McKeown-Eyssen H Sutherland et al. (2000) ArticleTitleOntario Familial Colon Cancer Registry: methods and first-year response rates Chronic Dis Canada 21 81–86 Occurrence Handle1:STN:280:DC%2BD3MvitFKqsw%3D%3D

    CAS  Google Scholar 

  21. S Eaker R Bergstrom A Bergstrom et al. (1998) ArticleTitleResponse rate to mailed epidemiologic questionnaires: a population-based randomized trial of variations in design and mailing routines Am J Epidemiol 147 74–82 Occurrence Handle1:STN:280:DyaK1c7gtlGrtw%3D%3D Occurrence Handle9440402

    CAS  PubMed  Google Scholar 

  22. P Butow A Coates (1999) ArticleTitleDunn SM. Psychosocial predictors of survival in metastatic melanoma. J Clin Oncol 17 2256–2264 Occurrence Handle1:STN:280:DC%2BD3c%2FjtVSisA%3D%3D Occurrence Handle10561283

    CAS  PubMed  Google Scholar 

  23. J.H. Sutherland J Lacroix J Knight et al. (2001) ArticleTitleThe Ontario Familial Breast Cancer Registry for Breast Cancer Studies: design and first year recruitment rates in Ontario J Clin Epidemiol 54 93–8 Occurrence Handle10.1016/S0895-4356(00)00263-8 Occurrence Handle1:STN:280:DC%2BD3M7lsFaktg%3D%3D Occurrence Handle11165472

    Article  CAS  PubMed  Google Scholar 

  24. L.M Seybolt C Vachon K Potter et al. (1997) ArticleTitleEvaluation of potential sources of bias in a genetic epidemiologic study of breast cancer Gene Epidemiol 14 85–95 Occurrence Handle10.1002/(SICI)1098-2272(1997)14:1<85::AID-GEPI7>3.0.CO;2-4 Occurrence Handle1:STN:280:ByiB3cjot1w%3D

    Article  CAS  Google Scholar 

  25. R Brandt E Hartmann Z Ali et al. (2002) ArticleTitleMotivations and concerns of women considering genetic testing for breast cancer: a comparison between affected and at-risk probands Gene Test 6 203–205 Occurrence Handle10.1089/109065702761403360

    Article  Google Scholar 

  26. EJ Meijers-Heijboer LC Verhoog CT Brekelmans et al. (2000) ArticleTitlePresymptomatic DNA testing and prophylactic surgery in families with a BRCA1 or BRCA2 mutation Lancet 355 2015–2020 Occurrence Handle10.1016/S0140-6736(00)02347-3 Occurrence Handle1:CAS:528:DC%2BD3cXksl2lt7s%3D Occurrence Handle10885351

    Article  CAS  PubMed  Google Scholar 

  27. C Lerman J Seay A Balshem J Audrain (1995) ArticleTitleInterest in genetic testing among first-degree relatives of breast cancer patients Am J Med Genet 57 385–92 Occurrence Handle1:STN:280:ByqH3cjmtF0%3D Occurrence Handle7677139

    CAS  PubMed  Google Scholar 

  28. B Meiser P Butow A Barratt et al. (2000) ArticleTitleAttitudes to genetic testing for breast cancer susceptibility in women at increased risk developing hereditary breast cancer J Med Genet 37 472–476 Occurrence Handle10.1136/jmg.37.6.472 Occurrence Handle1:STN:280:DC%2BD3czotF2rsw%3D%3D Occurrence Handle10928861

    Article  CAS  PubMed  Google Scholar 

  29. CK Jorgensen B Carlsmose (1998) ArticleTitleA comparison of Teleform with manual data entry: validation of automated forms processing Comput Biol Med 28 659–667 Occurrence Handle10.1016/S0010-4825(98)00038-9 Occurrence Handle1:STN:280:DyaK1M%2FpsFShtQ%3D%3D Occurrence Handle9878977

    Article  CAS  PubMed  Google Scholar 

  30. J.L Hopper (2002) ArticleTitleThe Australian Twin Registry Twin Res 5 329–336 Occurrence Handle10.1375/136905202320906048 Occurrence Handle12537854

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Kelly-Anne Phillips.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Phillips, KA., Butow, P.N., Stewart, A.E. et al. Predictors of participation in clinical and psychosocial follow-up of the kConFab breast cancer family cohort. Familial Cancer 4, 105–113 (2005). https://doi.org/10.1007/s10689-004-6129-x

Download citation

  • Revised:

  • Accepted:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10689-004-6129-x

Keywords

Navigation