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 type^a	Including those with cancer diagnosis before baseline^b			Excluding those with cancer diagnosis before baseline^b
	# ACR^c	Sensitivity (95% CI)^d	PPV (95% CI)^e	# ACR^c	Sensitivity (95% CI)^d	PPV (95% CI)^e
Overall	810	92.1 (90.0, 93.9)	77.8 (75.0, 80.4)	789	93.9 (92.0, 95.5)	78.9 (76.2, 81.5)
Common	724	89.6 (87.2, 91.8)	84.5 (81.7, 87.0)	707	91.2 (88.9, 93.2)	85.9 (83.2, 88.3)
Common (no skin)	666	90.1 (87.6, 92.3)	88.6 (86.0, 90.9)	649	91.8 (89.5, 93.8)	89.8 (87.2, 92.0)
Rare	86	62.8 (51.7, 73.0)	35.8 (28.1, 44.0)	82	64.6 (53.3, 74.9)	35.8 (28.1, 44.1)
Rare (no cervix)	84	61.9 (50.7, 72.3)	54.2 (43.7, 64.4)	80	63.8 (52.2, 74.2)	54.8 (44.2, 65.2)
Oral/respiratory	41	63.4 (46.9, 77.9)	60.5 (44.4, 75.0)	36	69.4 (51.9, 83.7)	61.0 (44.5, 75.8)
Lung and bronchus	25	76.0 (54.9, 90.6)	76.0 (54.9, 90.6)	23	82.6 (61.2, 95.0)	76.0 (54.9, 90.6)
Digestive/hepatic	114	89.5 (82.3, 94.4)	85.7 (78.1, 91.5)	110	91.8 (85.0, 96.2)	87.1 (79.6, 92.6)
Large intestine	68	85.3 (74.6, 92.7)	79.5 (68.4, 88.0)	65	87.7 (77.2, 94.5)	81.4 (70.3, 89.7)
Rectum	19	42.1 (20.3, 66.5)	80.0 (44.4, 97.5)	19	42.1 (20.3, 66.5)	80.0 (44.4, 97.5)
Blood/hematopoietic	52	75.0 (61.1, 86.0)	86.7 (73.2, 94.9)	48	79.2 (65.0, 89.5)	86.4 (72.6, 94.8)
Skin (melanoma)	58	79.3 (66.6, 88.8)	50.5 (39.9, 61.2)	58	79.3 (66.6, 88.8)	52.9 (41.9, 63.7)
Breast	204	95.6 (91.8, 98.0)	93.8 (89.5, 96.6)	199	97.5 (94.2, 99.2)	94.2 (90.0, 97.0)
Female reproductive	67	88.1 (77.8, 94.7)	46.8 (37.9, 55.9)	66	89.4 (79.4, 95.6)	47.6 (38.5, 56.7)
Cervix uteri	—	—	3.6 (0.4, 12.5)	—	—	3.6 (0.4, 12.5)
Uterus	49	85.7 (72.8, 94.1)	79.2 (65.9, 89.2)	48	87.5 (74.8, 95.3)	82.4 (69.1, 91.6)
Ovary	—	—	40.0 (16.3, 67.7)	—	—	40.0 (16.3, 67.7)
Male reproductive	159	96.9 (92.8, 99.0)	91.1 (85.8, 94.9)	157	97.5 (93.6, 99.3)	93.3 (88.3, 96.6)
Prostate gland	154	96.8 (92.6, 98.9)	90.9 (85.4, 94.8)	152	97.4 (93.4, 99.3)	93.1 (88.0, 96.5)
Urinary	51	82.4 (69.1, 91.6)	87.5 (74.8, 95.3)	51	82.4 (69.1, 91.6)	87.5 (74.8, 95.3)
Kidney	16	87.5 (61.7, 98.4)	73.7 (48.8, 90.9)	16	87.5 (61.7, 98.4)	73.7 (48.8, 90.9)
Urinary bladder	31	77.4 (58.9, 90.4)	85.7 (67.3, 96.0)	31	77.4 (58.9, 90.4)	85.7 (67.3, 96.0)
CNS/eye	—	—	44.4 (18.7, 81.3)	—	—	—
Endocrine	20	70.0 (45.7, 88.1)	87.5 (61.7, 98.4)	20	70.0 (45.7, 88.1)	87.5 (61.7, 98.4)
Thyroid	20	70.0 (45.7, 88.1)	87.5 (61.7, 98.4)	20	70.0 (45.7, 88.1)	87.5 (61.7, 98.4)
Lymphatic	28	89.3 (71.8, 97.7)	69.4 (51.9, 83.7)	28	89.3 (71.8, 97.7)	69.4 (51.9, 83.7)
Other^f	—	—	—	—	—	—

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.