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

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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.

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Acknowledgments

Genevieve Larouche received a scholarship from the Psychosocial Oncology Research Training (PORT) program. Jacques Simard is Chairholder of the Canada Research Chair in Oncogenetics and Michel Dorval holds a Fonds de la Recherche en Santé du Québec (FRSQ) Investigator Award. This research was supported by the Canadian Breast Cancer Research Alliance (Grant # 020649). The INHERIT research program was supported by the Canadian Institutes of Health Research (CIHR; Grants # CRT-43822; CRN-87521) and the Canadian Breast Cancer Research Alliance (Grant # 11383). The authors would like to thank Claudia Côté (data management and quality insurance), Stéphanie Camden and Myrto Mondor (statistical support) and Guy Rousseau (linguistic revision).

Conflict of interest

The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Faculté de pharmacie, Université Laval, Pavillon Ferdinand-Vandry, 1050 Avenue de la Médecine, Quebec, QC, G1V 0A6, Canada

    Geneviève Larouche & Michel Dorval

  2. Unité de recherche en santé des populations, Centre de recherche FRSQ du Centre hospitalier affilié universitaire de Québec, 1050 Chemin Sainte-Foy, Quebec, QC, G1S 4L8, Canada

    Geneviève Larouche, Karine Bouchard, Jocelyne Chiquette, Christine Desbiens & Michel Dorval

  3. Centre des maladies du sein Deschênes-Fabia, 1050 Chemin Sainte-Foy, Quebec, QC, G1S 4L8, Canada

    Jocelyne Chiquette, Christine Desbiens & Michel Dorval

  4. Faculté de médecine, Université Laval, Pavillon Ferdinand-Vandry, 1050 Avenue de la Médecine, Quebec, QC, G1V 0A6, Canada

    Jocelyne Chiquette, Christine Desbiens & Jacques Simard

  5. Laboratoire de génomique des cancers, Centre de recherche du CHUL, CHUQ, 2705 boul. Laurier, Quebec, QC, G1V 4G2, Canada

    Jacques Simard

Authors
  1. Geneviève Larouche
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  2. Karine Bouchard
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  3. Jocelyne Chiquette
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  4. Christine Desbiens
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  5. Jacques Simard
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  6. Michel Dorval
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Corresponding author

Correspondence to Michel Dorval.

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Larouche, G., Bouchard, K., Chiquette, J. et al. Self-reported mammography use following BRCA1/2 genetic testing may be overestimated. Familial Cancer 11, 27–32 (2012). https://doi.org/10.1007/s10689-011-9490-6

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  • DOI: https://doi.org/10.1007/s10689-011-9490-6

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