Uptake and outcomes of small intestinal and urinary tract cancer surveillance in Lynch syndrome

Table 1 Small intestinal cancer and urinary tract cancer surveillance outcomes in Lynch syndrome

	n = 317
Individuals who underwent SIC surveillance	86 (27%)
SIC surveillance exams completed per individual, median (IQR)	1 (1-1)
Total completed SIC surveillance exams	105
VCE	58 (55%)
SBFT	47 (45%)
Abnormal SIC surveillance exams leading to further work-up	5 (5%)
VCE	5 (100%)
SBFT	0 (0%)
Abnormal SIC surveillance exams leading to a SIC diagnosis	0 (0%)
Individuals who underwent UTC surveillance	99 (31%)
UTC surveillance exams completed per individual, median (IQR)	2 (1-3)
Total completed UTC surveillance exams	303
Urinalysis	197 (65%)
Urine cytology	106 (35%)
Abnormal UTC surveillance exams leading to further work-up	19 (6%)
Urinalysis	9 (47%)
Urine Cytology	10 (53%)
Abnormal UTC surveillance exams leading to a UTC diagnosis	1 (5%)

SIC: Small intestinal cancer; UTC: Urinary tract cancer; VCE: Video capsule endoscopy; SBFT: Small bowel follow through.

Table 2 Characteristics of patients with an initial Lynch syndrome management visit between January 1, 2017 and October 29, 2020

	n = 155
Age (yr), median (IQR)	46 (33-58)
Female sex	100 (65%)
Race
White	139 (90%)
Black	3 (2%)
Asian	7 (5%)
Other	2 (1%)
Unknown	4 (3%)
Hispanic ethnicity	2 (1%)
Ashkenazi Jewish ancestry	16 (10%)
Lynch syndrome gene
MLH1	29 (19%)
MSH2 or EPCAM	40 (26%)
MSH6	45 (29%)
PMS2	41 (26%)
Personal history of cancer	70 (45%)
Small intestinal	2 (1%)
Urinary tract	6 (4%)
Colorectal	30 (19%)
Family history of cancer	151 (97%)
Small intestinal	8 (5%)
Urinary tract	35 (23%)
Colorectal	113 (73%)
Type of insurance
Private insurance	134 (86%)
Medicare insurance	16 (10%)
Medicaid insurance	5 (3%)
Provider
Provider 1	121 (78%)
Provider 2	17 (11%)
Provider 3	17 (11%)

Table 3 Characteristics of individuals with Lynch syndrome who chose to undergo and/or completed small intestinal cancer surveillance

	Surveillance chosen (n = 63)		Surveillance not chosen (n = 92)	P value	Surveillance completed (n = 26)	Surveillance not completed (n = 37)	P value
Age (yr), median (IQR)	48 (37-59)	42 (32-57)		0.114	56 (46-62)	42 (33-54)	0.007a
Female	44 (70%)	56 (61%)		0.252	21 (81%)	23 (62%)	0.113
Race				0.750			0.531
White	58 (92%)	81 (88%)			24 (92%)	34 (92%)
Black	1 (2%)	2 (2%)			0 (0%)	1 (3%)
Asian	3 (5%)	4 (4%)			2 (8%)	1 (3%)
Other	0 (0%)	2 (2%)			-	-
Unknown	1 (2%)	3 (3%)			0 (0%)	1 (3%)
Hispanic ethnicity	1 (2%)	1 (1%)		0.912	0 (0%)	1 (3%)	0.211
AJ ancestry	5 (8%)	11 (12%)		0.687	1 (4%)	4 (11%)	0.489
Lynch syndrome gene				0.034a			0.357
MLH1	10 (16%)	19 (21%)			5 (19%)	5 (14%)
MSH2 or EPCAM	24 (38%)	16 (17%)			7 (27%)	17 (46%)
MSH6	14 (22%)	31 (34%)			8 (31%)	6 (16%)
PMS2	15 (24%)	26 (28%)			6 (23%)	9 (24%)
Personal history of cancer	33 (52%)	37 (40%)		0.135	17 (65%)	16 (43%)	0.083
Family history of SIC	5 (8%)	3 (3%)		0.182	1 (4%)	4 (11%)	0.340
Insurance				0.111			0.314
Private	58 (92%)	76 (83%)			25 (96%)	33 (89%)
Medicare	5 (8%)	11 (12%)			1 (4%)	4 (11%)
Medicaid	0 (0%)	5 (5%)			-	-
Provider				0.000a			0.030a
Provider 1	39 (62%)	82 (89%)			17 (65%)	22 (59%)
Provider 2	13 (21%)	4 (4%)			8 (31%)	5 (14%)
Provider 3	11 (17%)	6 (7%)			1 (4%)	10 (27%)

^aP < 0.05. SIC: Small intestinal cancer; AJ: Ashkenazi Jewish.

Table 4 Characteristics of individuals with Lynch syndrome who chose to undergo and/or completed urinary tract cancer surveillance

	Surveillance chosen (n = 58)	Surveillance not chosen(n = 97)	P value	Surveillance completed (n = 32)	Surveillance not completed (n = 26)	P value
Age (yr), median (IQR)	48 (39-60)	40 (32-55)	0.018a	45 (40-61)	50 (37-60)	0.772
Female	37 (64%)	63 (65%)	0.884	26 (81%)	11 (42%)	0.002a
Race			0.431			0.498
White	54 (93%)	85 (88%)		30 (94%)	24 (92%)
Black	1 (2%)	2 (2%)		0 (0%)	1 (4%)
Asian	3 (5%)	4 (4%)		2 (6%)	1 (4%)
Other	0 (0%)	2 (2%)		-	-
Unknown	0 (0%)	4 (4%)		-	-
Hispanic ethnicity	0 (0%)	2 (2%)	0.336	-	-	-
AJ ancestry	3 (5%)	13 (13%)	0.229	3 (9%)	0 (0%)	0.006a
Lynch syndrome gene			0.640			0.171
MLH1	8 (14%)	21 (22%)		3 (9%)	5 (19%)
MSH2 or EPCAM	17 (29%)	23 (24%)		9 (28%)	8 (31%)
MSH6	17 (29%)	28 (29%)		13 (41%)	4 (15%)
PMS2	16 (28%)	25 (26%)		7 (22%)	9 (35%)
Personal history of cancer	29 (50%)	41 (42%)	0.349	17 (53%)	12 (46 %)	0.597
Family history of UTC	15 (26%)	20 (21%)	0.477	11 (34%)	4 (15%)	0.118
Insurance			0.631			0.402
Private	50 (86%)	84 (87%)		29 (91%)	21 (81%)
Medicare	7 (12%)	9 (9%)		3 (9%)	4 (15%)
Medicaid	1 (2%)	4 (4%)		0 (0%)	1 (4%)
Provider
Provider 1	36 (62%)	85 (88%)	0.001a	28 (88%)	8 (31%)	0.000 a
Provider 2	12 (21%)	5 (5%)		2 (6%)	10 (38%)
Provider 3	10 (17%)	7 (7%)		2 (6%)	8 (31%)

^aP < 0.05. UTC: Urinary tract cancer; AJ: Ashkenazi Jewish.