Reliability of reporting family history of cancer by patients and their relatives - a prospective study

Backgound: Accurate information regarding cancer diagnoses and age at disease onset is extremely important when assessing the likelihood of hereditary cancer syndromes in a particular family and the risk of developing cancer for an individual patient. Family history of cancer strongly impacts genetic testing decisions and surveillance recommendations (personalized screening based on risk of specific cancers). Cancer genetic clinics worldwide strive to obtain as accurate data regarding patients' family history of cancer as possible. Compared to other countries, Slovenia is fortunate to have a high-quality cancer registry, established in 1950. All diagnoses of cancer are recorded in the Slovenian Cancer Registry as reporting is mandatory and proscribed by law. In accordance with current clinical pathways, our department is therefore able to verify all diagnoses of cancer which are voluntarily reported by our patients. Our research project aims to assess the accuracy of family history of cancer reported by patients of the Department for Clinical Cancer Genetics, Institute of Oncology Ljubljana. 

Methods: During the period of 12-24 months, all individuals and their family members (minimum of I 000 families) whose personal and family history of cancer is verified in the Slovenian Cancer Registry, will be enrolled in our prospective study. 

Aims/Objectives: 

(1)to estimate how accurately diagnoses of cancer and age at disease onset are reported for probands themselves and for their relatives;

(2)to ascertain which cancers are most likely and which are least likely to be reported accurately;

(3)to estimate the percentage of cases where decisions regarding genetic testing and risk stratification will be modified after cancer diagnoses and age-of-onset are verified, compared to initial decisions based on anamnestic data alone.