Research Article

The Importance of Cancer Registry Linkage for Studying Rare Cancers in Prospective Cohorts

Table 2

Sensitivity and positive predictive value (PPV) of self-reported cancer diagnoses.

Cancer typeaIncluding those with cancer diagnosis before baselinebExcluding those with cancer diagnosis before baselineb
# ACRcSensitivity (95% CI)dPPV (95% CI)e# ACRcSensitivity (95% CI)dPPV (95% CI)e

Overall81092.1 (90.0, 93.9)77.8 (75.0, 80.4)78993.9 (92.0, 95.5)78.9 (76.2, 81.5)

Common72489.6 (87.2, 91.8)84.5 (81.7, 87.0)70791.2 (88.9, 93.2)85.9 (83.2, 88.3)
Common (no skin)66690.1 (87.6, 92.3)88.6 (86.0, 90.9)64991.8 (89.5, 93.8)89.8 (87.2, 92.0)
Rare8662.8 (51.7, 73.0)35.8 (28.1, 44.0)8264.6 (53.3, 74.9)35.8 (28.1, 44.1)
Rare (no cervix)8461.9 (50.7, 72.3)54.2 (43.7, 64.4)8063.8 (52.2, 74.2)54.8 (44.2, 65.2)

Oral/respiratory4163.4 (46.9, 77.9)60.5 (44.4, 75.0)3669.4 (51.9, 83.7)61.0 (44.5, 75.8)
Lung and bronchus2576.0 (54.9, 90.6)76.0 (54.9, 90.6)2382.6 (61.2, 95.0)76.0 (54.9, 90.6)
Digestive/hepatic11489.5 (82.3, 94.4)85.7 (78.1, 91.5)11091.8 (85.0, 96.2)87.1 (79.6, 92.6)
Large intestine6885.3 (74.6, 92.7)79.5 (68.4, 88.0)6587.7 (77.2, 94.5)81.4 (70.3, 89.7)
Rectum1942.1 (20.3, 66.5)80.0 (44.4, 97.5)1942.1 (20.3, 66.5)80.0 (44.4, 97.5)
Blood/hematopoietic5275.0 (61.1, 86.0)86.7 (73.2, 94.9)4879.2 (65.0, 89.5)86.4 (72.6, 94.8)
Skin (melanoma)5879.3 (66.6, 88.8)50.5 (39.9, 61.2)5879.3 (66.6, 88.8)52.9 (41.9, 63.7)
Breast20495.6 (91.8, 98.0)93.8 (89.5, 96.6)19997.5 (94.2, 99.2)94.2 (90.0, 97.0)
Female reproductive6788.1 (77.8, 94.7)46.8 (37.9, 55.9)6689.4 (79.4, 95.6)47.6 (38.5, 56.7)
Cervix uteri3.6 (0.4, 12.5)3.6 (0.4, 12.5)
Uterus4985.7 (72.8, 94.1)79.2 (65.9, 89.2)4887.5 (74.8, 95.3)82.4 (69.1, 91.6)
Ovary40.0 (16.3, 67.7)40.0 (16.3, 67.7)
Male reproductive15996.9 (92.8, 99.0)91.1 (85.8, 94.9)15797.5 (93.6, 99.3)93.3 (88.3, 96.6)
Prostate gland15496.8 (92.6, 98.9)90.9 (85.4, 94.8)15297.4 (93.4, 99.3)93.1 (88.0, 96.5)
Urinary5182.4 (69.1, 91.6)87.5 (74.8, 95.3)5182.4 (69.1, 91.6)87.5 (74.8, 95.3)
Kidney1687.5 (61.7, 98.4)73.7 (48.8, 90.9)1687.5 (61.7, 98.4)73.7 (48.8, 90.9)
Urinary bladder3177.4 (58.9, 90.4)85.7 (67.3, 96.0)3177.4 (58.9, 90.4)85.7 (67.3, 96.0)
CNS/eye44.4 (18.7, 81.3)
Endocrine2070.0 (45.7, 88.1)87.5 (61.7, 98.4)2070.0 (45.7, 88.1)87.5 (61.7, 98.4)
Thyroid2070.0 (45.7, 88.1)87.5 (61.7, 98.4)2070.0 (45.7, 88.1)87.5 (61.7, 98.4)
Lymphatic2889.3 (71.8, 97.7)69.4 (51.9, 83.7)2889.3 (71.8, 97.7)69.4 (51.9, 83.7)
Otherf

PPV=Positive predictive value, ACR = Alberta Cancer Registry, CI=Confidence interval, CNS=Central nervous system. aBolded groups generated by combining appropriate SEER 2018 site categories. Unbolded types are specific groups within the bolded groups above. See Table S1 for groupings. Only SEER 2018 cancer sites with >10 ACR diagnoses and/or >10 self-reported diagnoses were reported. bA participant had a diagnosis before baseline if their age of first cancer diagnosis in the ACR was before their age at baseline. cNumber of diagnoses in the ACR. A “—“ indicates there was <10. Common and rare diagnoses add up to overall. Bolded cancer site types do not add up to overall as the “Other” and “CNS/eye” groups are not included. dSensitivities for groups with 10 or more ACR diagnoses are reported. A “—” indicates there were <10 ACR diagnoses. e PPV’s for groups with 10 or more self-reported diagnoses are reported. A “—” indicates there were <10 self-reported diagnoses. fIncludes SEER 2018 site categories of unknown, ill-defined, bones and joints, connective and soft tissue, and retroperitoneum and peritoneum.