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.

Is Low FMR1 CGG Repeat Length in Males Correlated with Family History of BRCA‐Associated Cancers? An Exploratory Analysis of Medical Records

“…This approach likely underestimates the family history prevalence and may impact the validity of the diagnoses. This limitation has been identified in previous literature (Fiederling et al 2016;Kerber and Slattery 1997), and therefore in future research we would suggest that family histories and diagnoses be verified by a genetic counselor, where possible. Relatedly, males may be particularly poor reporters of family medical history, particularly with regard to BRCAassociated female cancers and primary care providers may not include an accurate family history of cancer in the patient's medical record, particularly with regard to female-associated cancers when the patient is male.…”

Gastrointestinal cancer risk in patients with a family history of gastrointestinal cancer

“…Moreover, accuracies pertaining to memories may depend on cancer type and severity. 36 People has a tendency to remember family history of pancreatic cancer more correctly than those of other can-…”

Lifestyle and cancer incidence and mortality risk depending on family history of cancer in two prospective cohorts

“…Since family history was based on self‐report it may also be subject to misclassification, which would likely attenuate the observed cancer risk estimates associated with a family history of cancer. While the validity of self‐reported family history of cancer seems to vary greatly by cancer site, for common cancers, the validity appears to be fairly accurate . Most common cancers are strongly age‐dependent and thus positive report of a family history of cancer will be dependent on the age of the participants.…”