title: Validity of self-reported family history of cancer: A systematic literature review on selected cancers.
abstract: Evidence regarding validity of self-reported family history of cancer (FHC) has been reviewed only for breast, colorectal, prostate, ovarian, endometrial and uterine cancer. We aimed to systematically review studies assessing validity of self-reported family history for the remaining cancer sites. We searched the Medline database for relevant studies published by January 2016. We extracted information on the study design and the positive predictive value (PPV) of self-reported FHC, defined as the proportion of reported cancer diagnoses among relatives that was confirmed by a reference standard (as a measure of over-reporting). We also extracted information on sensitivity of self-reported FHC (as a measure of underreporting). Overall, 21 studies were included that provided information on the PPV of self-reported FHC for relevant cancers and four studies also provided information on sensitivity. The PPV was highest (mostly >70%) for pancreatic, lung, thyroid and urinary system cancers and for leukemia and lymphoma, while it was lowest for stomach and liver cancer. Sensitivity was highest (>70%) for pancreatic cancer, lung cancer, brain cancer, melanoma, leukemia and lymphoma. For several cancers, sample sizes were low and the number of studies limited, particularly regarding sensitivity of self-reported FHC. In conclusion, for some cancers (e.g., pancreatic cancer, lung cancer, leukemia, lymphoma) self-reported FHC can be considered sufficiently valid to be useful, for example, in preventive counseling. For several cancers, it is not sufficiently studied or the pattern is inconsistent. This needs to be taken into account when using self-reported information about FHC in clinical practice or epidemiological research.
authors.affiliation: Epidemiological Cancer Registry Baden-Wuerttemberg, German Cancer Research Center (DKFZ), Heidelberg, Germany.
authors.forename: Jonas
authors.initials: J
authors.lastname: Fiederling
authors.affiliation: Epidemiological Cancer Registry Baden-Wuerttemberg, German Cancer Research Center (DKFZ), Heidelberg, Germany.
authors.forename: Ahmad Zia
authors.initials: AZ
authors.lastname: Shams
authors.affiliation: Department of Clinical Epidemiology, Leibniz Institute for Prevention Research and Epidemiology - BIPS, Bremen, Germany.|Faculty of Human and Health Sciences, University of Bremen, Bremen, Germany.
authors.forename: Ulrike
authors.initials: U
authors.lastname: Haug
mesh_terms: D006801:Humans; D008487:Medical History Taking / Q000379:methods / Q000592:standards*; D009369:Neoplasms / Q000175:diagnosis* / Q000453:epidemiology; D015203:Reproducibility of Results; D057566:Self Report / Q000592:standards*
keywords: accuracy; cancer; family history; self-report; validity