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Consistency of self-reported first-degree family history of cancer in a population-based study

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Abstract

The aim of this study was to assess the prevalence and consistency of self-reported family history of cancer among first-degree relatives (FDR) in a population-based study. Women at primary care units (PCU) were submitted to a questionnaire about cancer family history. Consistency of the report was determined by comparing self-reported history at the PCU to data from subsequent genetic evaluations and/or cancer confirmatory documents. Consistency in relation to degree of education, reported tumor type and reported age at cancer diagnosis in FDR was assessed. In 8,881 women interviewed, the prevalence of cancer in an FDR was 25.14% (CI 95%: 24.14; 25.94). Mean age was 40.29 years and most (70.26%) had ≤8 years of education. There was a good agreement of self-reported cancer history at the PCU and in subsequent genetic evaluations [Kappa coefficient = 0.76 (P < 0.05)]. Inconsistencies were not related to low literacy (χ 2 = 2.027; P = 0.363). Consistency of the reported information for cancer status, cancer type and age of onset was 92.59%, 85.33% and 92.64%, respectively. The prevalence of cancer history in an FDR was similar to previous reports in other populations. Consistency and reliability of the self-reported information was high, regardless of educational level.

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Abbreviations

BC:

Breast cancer

BCPS:

Breast cancer predisposition syndrome

CD:

Confirmatory documents

FDR:

First degree relative

GCRA:

Genetic cancer risk assessment

HBCC:

Hereditary breast and colorectal cancer syndrome

HBOC:

Hereditary breast and ovarian cancer syndrome

LFS:

Li-Fraumeni syndrome

LFLS:

Li-Fraumeni-like syndrome

LBCRE:

Lifetime breast cancer risk estimates

NMPOA:

Núcleo Mama Porto Alegre

PCU:

Primary care units

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Acknowledgments

The NMPOA Cohort, from which the patients derive, is maintained by the Associação Hospitalar Moinhos de Vento, in a partnership with Instituto da Mama do Rio Grande do Sul and the Municipal Health Agency from Porto Alegre. We are grateful to Bernadete Weber, Karen Barboza de Pereira, Patricia Izetti Lisbôa Ribeiro, Diego Pasetto, Giovana Skonieski, Cristina Brinkmann de Oliveira Netto, Ana Cecília Mano de Azevedo, Ernestina Aguiar, Juliana Giacomazzi, Érica Batassini, Vanessa Belo Reyes and the NMPOA team for their help with the recruitment, evaluation and follow-up of the patients included in this study. We would like to thank to Dr. Paulo Recena Grassi for the information obtained from the population-based cancer registry of Porto Alegre and Drs. José Roberto Goldim, Juan Llerena Jr, Victor Penchaszadeh, and Philip Kivitz for stimulating discussions. The authors report no conflict of interest regarding the information presented in this manuscript. Grant acknowledgements: this study was supported in part by grants from Susan G. Komen for the Cure (POP#0403033), Fundo de Incentivo à Pesquisa—FIPE, Hospital de Clínicas de Porto Alegre (# 04-170), FAPERGS (grant number PPSUS-II 0700964), and Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES - PRODOC grant number 00202/03-7). P. A-P is a researcher from CNPq.

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Authors and Affiliations

  1. Postgraduate Program in Medicine: Medical Sciences, Federal University of Rio Grande do Sul, Porto Alegre, Brazil

    Fernanda Lenara Roth, Lavínia Schuler-Faccini & Roberto Giugliani

  2. Department of Statistics, Mathematics Institute, Federal University of Rio Grande do Sul, Porto Alegre, Brazil

    Suzi Alves Camey

  3. Núcleo Mama Porto Alegre and Associação Hospitalar Moinhos de Vento, Porto Alegre, Brazil

    Maira Caleffi, Carla Bochi, Susana Mayer Moreira & Patrícia Ashton-Prolla

  4. Department of Genetics, Federal University of Rio Grande do Sul, Porto Alegre, Brazil

    Lavínia Schuler-Faccini, Roberto Giugliani & Patrícia Ashton-Prolla

  5. Service of Medical Genetics, Hospital de Clínicas de Porto Alegre, Rua Ramiro Barcelos 2350, Porto Alegre, RS, 90035-903, Brazil

    Lavínia Schuler-Faccini, Roberto Giugliani & Patrícia Ashton-Prolla

  6. Postgraduate Program in Genetics and Molecular Biology, Federal University of Rio Grande do Sul, Porto Alegre, Brazil

    Lavínia Schuler-Faccini, Edenir Inêz Palmero, Roberto Giugliani & Patrícia Ashton-Prolla

  7. Postgraduate Program in Epidemiology, Federal University of Rio Grande do Sul, Porto Alegre, Brazil

    Luciane Kalakun

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  1. Fernanda Lenara Roth
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  2. Suzi Alves Camey
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  9. Roberto Giugliani
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  10. Patrícia Ashton-Prolla
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Correspondence to Patrícia Ashton-Prolla.

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Roth, F.L., Camey, S.A., Caleffi, M. et al. Consistency of self-reported first-degree family history of cancer in a population-based study. Familial Cancer 8, 195–202 (2009). https://doi.org/10.1007/s10689-008-9228-2

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  • DOI: https://doi.org/10.1007/s10689-008-9228-2

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