Coherence and Completeness of Population-based Family Cancer Reports

Louise Wideroff; Anne O. Garceau; Mark H. Greene; Marsha Dunn; Timothy McNeel; Phuong Mai; Gordon Willis; Lou Gonsalves; Michael Martin; Barry I. Graubard

doi:10.1158/1055-9965.EPI-09-1138

DOI: 10.1158/1055-9965.EPI-09-1138 Published March 2010

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Fig. 1.
Classification of 2,657 family history of cancer self-reports by consistency and site specificity (i.e., coherence).

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Table 1.

Adjusted weighted percentages of cancer reports with varying levels of consistency and site specificity in relatives with a positive cancer history

Type of report*	Reports about all relatives (n = 2,657 reports)	Reports about FDRs (n = 918 reports)	Reports about SDRs (n = 1,739 reports)
Type of report*	% (95% CI)	% (95% CI)	% (95% CI)
Consistent with malignancy	97.7 (96.9-98.3)	95.3 (93.3-96.7)	98.9 (98.2-99.3)
Well-defined site	79.0 (77.0-80.8)	86.6 (83.6-89.2)	75.0 (72.3-77.6)
Unspecified site	10.1 (8.5-11.9)	2.1 (1.2-3.8)	14.2 (11.8-16.9)
Ill-defined site	8.6 (7.5-9.9)	6.5 (4.8-8.7)	9.7 (8.2-11.4)
Not consistent with malignancy	1.3 (0.9-1.9)	2.9 (1.9-4.3)	0.4 (0.2-1.0)
Indeterminate	1.1 (0.7-1.7)	1.8 (0.9-3.8)	0.7 (0.4-1.2)

NOTE: After identifying 2,408 relatives (781 first-degree and 1,627 second-degree) with a cancer history, the 1,019 respondents were asked to report the cancer type or where in the body the cancer started. All percentages of cancer reports are weighted to the Connecticut population and adjusted for differential selection probabilities, rates of nonresponse, and poststratification.

↵*See Appendix I for examples of reports in the different categories.

Table 2.

Unadjusted and adjusted weighted percentages of ill-defined or unspecified (versus well-defined) cancer reports, by relative and respondent characteristics

Characteristics	FDRs		SDRs
Characteristics	Unadjusted % (95% CI)	Adjusted % (95% CI)	Unadjusted % (95% CI)	Adjusted % (95% CI)
Respondent characteristics
Sex
Female	9.0 (5.7-13.9)		19.7 (16.9-22.9)	19.7 (16.7-22.6)
Male	9.2 (6.3-13.1)		30.6 (25.6-36.1)	30.7 (25.3-36.0)
				P = 0.001
Age
25-34	3.1 (1.0-9.6)		21.4 (14.7-30.1)
35-44	7.3 (3.9-13.1)		21.6 (17.1-26.9)
45-54	7.0 (4.7-10.5)		27.0 (22.5-32.1)
55-64	16.6 (10.3-25.7)		27.0 (21.7-33.1)
Race/ethnicity
White	7.3 (5.7-9.3)	7.8 (5.7-9.8)	24.2 (21.5-27.0)
African-American	46.2 (18.3-76.6)	32.6 (12.1-53.0)	29.4 (14.2-51.3)
Hispanic	21.4 (9.0-43.1)	16.8 (0.0-34.8)	15.9 (8.3-28.4)
Other	8.3 (2.3-25.7)	5.9 (0.0-12.9)	24.3 (11.9-43.1)
		P = 0.008
Education
<High school, vocational, or other	13.8 (8.3-21.9)	12.1 (5.9-18.3)	24.9 (17.5-34.1)
High school	19.9 (11.2-32.8)	15.2 (8.8-21.6)	30.4 (23.3-38.6)
1-4 y college	7.3 (4.9-10.9)	8.5 (4.9-12.1)	21.2 (17.3-25.8)
>College	2.5 (1.0-6.1)	2.9 (0.1-5.7)	25.6 (20.7-31.1)
		P = 0.005, test for trend
Main parental living arrangement during childhood
Lived apart	9.0 (4.3-17.9)		20.7 (15.7-26.8)
Lived together	9.1 (6.7-12.2)		24.7 (21.9-27.7)
Ever had cancer
No or unknown	9.3 (6.8-12.6)		24.8 (22.1-27.8)
Yes	7.6 (3.6-15.5)		17.1 (10.5-26.6)
Household income
≤$20,000	17.1 (10.2-27.3)		27.8 (20.0-37.3)
$20,001-40,000	7.9 (4.3-14.2)		26.2 (18.7-35.5)
$40,001-60,000	14.3 (6.6-28.1)		30.3 (22.0-40.0)
$60,001-80,000	7.6 (3.8-14.5)		21.0 (16.3-26.5)
>$80,000	5.5 (3.2-9.5)		21.9 (17.9-26.6)
Don't know/refused	10.3 (4.0-23.8)		25.0 (13.6-41.4)
Total number of relatives
≤15	8.0 (5.0-12.6)		21.9 (16.5-28.5)
16-19	7.0 (3.6-13.3)		21.1 (15.5-28.1)
20-25	9.0 (5.7-14.0)		28.6 (24.0-33.7)
≥26	11.5 (5.9-21.1)		23.5 (18.7-29.2)
Relative characteristics
Sex
Female	6.5 (4.2-10.1)		24.8 (21.6-28.4)
Male	11.4 (7.6-16.7)		23.4 (19.9-27.2)
Vital status
Living	5.2 (3.3-8.3)	6.1 (3.4-8.8)	16.9 (12.0-23.3)	17.5 (11.8-23.2)
Deceased	12.8 (9.0-17.8)	11.3 (7.3-15.3)	26.1 (23.1-29.3)	25.9 (22.6-29.1)
Unknown	NA	NA	61.3 (0.4-99.9)	70.4 (61.8-78.9)
		P = 0.03		P < 0.00001
Generation*
Same or younger	12.6 (5.6-25.9)		10.7 (4.2-24.7)
Next older	8.1 (6.1-10.6)		26.0 (22.7-29.6)
Oldest	NA		22.8 (18.8-27.4)

NOTE: All percentages are weighted to the Connecticut population and adjusted for differential selection probabilities, rates of nonresponse, and poststratification. Adjusted percentages control for respondent age and race/ethnicity and for the other variables shown. Cells for variables that were not applicable to a particular model are labeled NA; cells for variables that were eliminated through backward stepwise regression are blank.

↵*Same or younger generation as the respondent includes siblings, children, and/or nieces and nephews; next older includes parents, aunts, and uncles; oldest includes grandparents.

Table 3.

Unadjusted and adjusted weighted percentages of relatives with unknown cancer history, by respondent and relative characteristics

Characteristics	FDRs (n = 6,242)		SDRs (n = 14,262)
Characteristics	Unadjusted % (95% CI)	Adjusted % (95% CI)	Unadjusted % (95% CI)	Adjusted % (95% CI)
Respondents
Sex
Female	0.6 (0.4-0.9)		7.0 (5.8-8.3)	7.0 (5.7-8.2)
Male	0.7 (0.4-1.2)		10.2 (8.5-12.3)	10.3 (8.5-12.1)
				P = 0.002
Age
25-34	0.4 (0.2-1.0)		6.2 (4.4-8.7)
35-44	0.6 (0.3-1.2)		8.5 (6.8-10.6)
45-54	0.8 (0.4-1.3)		8.5 (6.8-10.5)
55-64	0.7 (0.3-1.6)		10.6 (8.2-13.6)
Race/ethnicity
White	0.5 (0.3-0.7)	0.5 (0.3-0.7)	8.1 (6.9-9.4)
African-American	0.7 (0.2-2.0)	0.5 (0.0-1.1)	9.0 (5.1-15.5)
Hispanic	1.7 (0.6-5.0)	1.6 (0.0-3.3)	6.8 (3.6-12.4)
Other	1.9 (0.8-4.5)	2.4 (0.4-4.4)	15.8 (9.5-25.1)
		P = 0.01
Education
<High school, vocational, or other	1.6 (0.8-3.2)	1.2 (0.5-1.8)	12.2 (9.0-16.5)	11.8 (8.3-15.3)
High school	1.0 (0.5-2.0)	0.8 (0.1-1.5)	8.1 (6.0-10.9)	8.1 (5.9-10.3)
1-4 y college	0.3 (0.1-0.5)	0.3 (0.1-0.6)	7.2 (5.9-8.9)	7.3 (6.1-8.6)
>College	0.4 (0.2-0.9)	0.5 (0.1-0.9)	8.4 (6.0-11.5)	8.7 (6.4-11.0)
		P = 0.04, test for trend		P = 0.05
Main parental living arrangement during childhood
Lived together	0.5 (0.3-0.7)		7.5 (6.5-8.8)	7.8 (6.6-9.0)
Lived apart	1.8 (0.9-3.5)		13.7 (10.9-17.1)	12.4 (10.0-14.8)
				P = 0.0004
Ever had cancer
No or unknown	0.6 (0.4-0.8)		8.1 (7.0-9.3)	8.0 (6.9-9.2)
Yes	1.3 (0.5-3.2)		12.4 (8.3-18.2)	13.2 (9.1-17.3)
				P = 0.006
Household income
≤$20,000	0.6 (0.1-2.9)		9.3 (6.6-13.0)
$20,001-40,000	1.2 (0.6-2.3)		11.4 (8.3-15.5)
$40,001-60,000	1.0 (0.5-2.0)		7.2 (5.0-10.3)
$60,001-80,000	0.1 (0.0-0.7)		7.8 (5.5-11.0)
>$80,000	0.5 (0.2-0.9)		6.8 (5.4-8.5)
Don't know/refused	0.9 (0.3-2.8)		13.4 (9.1-19.2)
Total number of relatives
≤15	1.0 (0.5-1.7)		8.5 (6.7-10.7)
16-19	0.4 (0.2-1.1)		6.0 (4.3-8.3)
20-25	0.3 (0.1-0.7)		9.0 (7.3-11.1)
≥26	0.8 (0.4-1.5)		9.6 (7.4-12.3)
Relatives
Sex
Female	0.5 (0.3-0.9)		7.5 (6.3-8.9)
Male	0.8 (0.5-1.2)		9.4 (8.3-10.7)
Vital status
Living	0.4 (0.3-0.6)	0.5 (0.3-0.8)	3.0 (2.2-3.9)	4.0 (2.8-5.1)
Deceased	1.0 (0.5-2.1)	0.5 (0.1-0.8)	12.4 (10.7-14.3)	9.7 (8.1-11.2)
Unknown	49.0 (22.7-75.9)	22.7 (1.6-43.8)	73.9 (61.8-83.2)	58.6 (44.9-72.3)
		P < 0.0001		P < 0.0001
Generation*
Same or younger	0.2 (0.1-0.4)	0.3 (0.1-0.4)	1.2 (0.6-2.2)	2.3 (0.9-3.7)
Next older	1.4 (1.0-2.1)	1.4 (0.7-2.0)	10.2 (8.5-12.2)	9.9 (8.2-11.6)
Oldest	NA	NA	12.9 (11.1-14.8)	9.7 (8.2-11.2)
		P = 0.0001		P < 0.0001

NOTE: All percentages are weighted to the Connecticut population and adjusted for differential selection probabilities, rates of nonresponse, and poststratification. Adjusted percentages control for respondent age and race/ethnicity and for other respondent and relative characteristics that were significantly associated with unknown cancer history in final logistic regression models. Cells for variables that were not applicable to a particular model are labeled NA; cells for variables that were eliminated through backward stepwise regression are blank.

↵*Same or younger generation as the respondent includes siblings, children, and/or nieces and nephews; older includes parents, aunts, and uncles; oldest includes grandparents.