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Reliability of self-reported diagnostic radiation history in BRCA1/2 mutation carriers

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Abstract

We assessed reliability of self-reported diagnostic radiation history in BRCA1/2 mutation carriers with and without breast cancer. Within the frame-work of the HEBON study, 401 BRCA1/2 mutation carriers completed a baseline (1999–2004) and a follow-up questionnaire (2006–2007). Test–retest reliability of self-reported exposure to chest X-rays, fluoroscopies and mammograms was assessed for the entire study population and by case status. Overall proportion agreement on reporting ever/never exposure was good (> 75%), while the corresponding kappa coefficients were between 0.40 and 0.75, indicating at least moderate reliability beyond chance. Reliability of number of exposures was also good (> 75%). Proportion agreement on reporting age at first mammogram was low (40%) for exact consistency and moderate (60%) for consistency ± 1 year. Reliability of age at first mammogram was higher for cases than for unaffected carriers (P < 0.001) but this difference disappeared when excluding diagnostic mammograms (P = 0.60). In unaffected carriers proportion agreement on age at last mammogram was 50%. In general, the direction of disagreement on all items was equally distributed. More consistent reporting was mainly determined by a younger age at questionnaire completion. In conclusion, inconsistent self-report of diagnostic radiation by BRCA1/2 mutation carriers was mainly non-differential by disease status.

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Abbreviations

BPM:

Bilateral prophylactic mastectomy

BPO:

Bilateral prophylactic (salpingo-) oophorectomy

Carriers:

BRCA1/2 mutation carriers

CI:

Confidence interval

HEBON:

Hereditary Breast and Ovarian cancer study the Netherlands

MRI:

Magnetic resonance imaging

NCR:

Netherlands Cancer Registry

OR:

Odds ratio

PALGA:

Netherlands Pathology Database

TB:

Tuberculosis

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Acknowledgments

This work was supported by the Dutch Cancer Society (grants NKI1998-1854, NKI2004-3088, NKI 2007-3756).

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Correspondence to Matti A. Rookus.

Appendix

Appendix

The Netherlands Collaborative Group on Hereditary Breast Cancer (HEBON): Coordinating center: Netherlands Cancer Institute, Amsterdam: Senno Verhoef, Anouk Pijpe, Richard Brohet, Frans Hogervorst, Laura van ‘t Veer, Flora van Leeuwen, Matti Rookus; Erasmus Medical Center, Rotterdam: Margriet Colle ’e, Ans van den Ouweland, Mieke Kriege, Mieke Schutte, Maartje Hooning, Caroline Seynaeve; Leiden University Medical Center, Leiden: Christi van Asperen, Juul Wijnen, Peter Devilee; Radboud University Nijmegen Medical Center, Nijmegen: Nicoline Hoogerbrugge, Marjolijn Ligtenberg; University Medical Center Utrecht, Utrecht: Margreet Ausems, Rob van der Luijt; Amsterdam Medical Center: Cora Aalfs, Theo van Os; VU University Medical Center, Amsterdam: Hanne Meijers-Heijboer, Hans Gille; University Hospital Maastricht, Maastricht: Encarna Gomez-Garcia, Rien Blok; University Medical Center Groningen, Groningen: Jan Oosterwijk, Annemiek van der Hout; Netherlands Foundation for Detection of Hereditary Tumours, Leiden: Hans Vasen, Inge van Leeuwen.

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Pijpe, A., Manders, P., Mulder, R.L. et al. Reliability of self-reported diagnostic radiation history in BRCA1/2 mutation carriers. Eur J Epidemiol 25, 103–113 (2010). https://doi.org/10.1007/s10654-009-9416-x

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