Retrospective Cohort Study
Copyright ©The Author(s) 2021.
World J Clin Oncol. Nov 24, 2021; 12(11): 1023-1036
Published online Nov 24, 2021. doi: 10.5306/wjco.v12.i11.1023
Table 1 Small intestinal cancer and urinary tract cancer surveillance outcomes in Lynch syndrome

n = 317
Individuals who underwent SIC surveillance86 (27%)
SIC surveillance exams completed per individual, median (IQR)1 (1-1)
Total completed SIC surveillance exams105
VCE58 (55%)
SBFT47 (45%)
Abnormal SIC surveillance exams leading to further work-up5 (5%)
VCE5 (100%)
SBFT0 (0%)
Abnormal SIC surveillance exams leading to a SIC diagnosis0 (0%)
Individuals who underwent UTC surveillance99 (31%)
UTC surveillance exams completed per individual, median (IQR)2 (1-3)
Total completed UTC surveillance exams303
Urinalysis197 (65%)
Urine cytology106 (35%)
Abnormal UTC surveillance exams leading to further work-up19 (6%)
Urinalysis9 (47%)
Urine Cytology10 (53%)
Abnormal UTC surveillance exams leading to a UTC diagnosis1 (5%)
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 sex100 (65%)
Race
White139 (90%)
Black3 (2%)
Asian7 (5%)
Other2 (1%)
Unknown4 (3%)
Hispanic ethnicity2 (1%)
Ashkenazi Jewish ancestry16 (10%)
Lynch syndrome gene
MLH129 (19%)
MSH2 or EPCAM40 (26%)
MSH645 (29%)
PMS241 (26%)
Personal history of cancer70 (45%)
Small intestinal2 (1%)
Urinary tract6 (4%)
Colorectal30 (19%)
Family history of cancer151 (97%)
Small intestinal8 (5%)
Urinary tract35 (23%)
Colorectal113 (73%)
Type of insurance
Private insurance134 (86%)
Medicare insurance16 (10%)
Medicaid insurance5 (3%)
Provider
Provider 1121 (78%)
Provider 217 (11%)
Provider 317 (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)0.11456 (46-62)42 (33-54)0.007a
Female44 (70%)56 (61%)0.25221 (81%)23 (62%)0.113
Race0.7500.531
White 58 (92%)81 (88%)24 (92%)34 (92%)
Black1 (2%)2 (2%)0 (0%)1 (3%)
Asian3 (5%)4 (4%)2 (8%)1 (3%)
Other0 (0%)2 (2%)--
Unknown1 (2%)3 (3%)0 (0%)1 (3%)
Hispanic ethnicity1 (2%)1 (1%)0.9120 (0%)1 (3%)0.211
AJ ancestry5 (8%)11 (12%)0.6871 (4%)4 (11%)0.489
Lynch syndrome gene0.034a0.357
MLH110 (16%)19 (21%)5 (19%)5 (14%)
MSH2 or EPCAM24 (38%)16 (17%)7 (27%)17 (46%)
MSH614 (22%)31 (34%)8 (31%)6 (16%)
PMS215 (24%)26 (28%)6 (23%)9 (24%)
Personal history of cancer33 (52%)37 (40%)0.13517 (65%)16 (43%)0.083
Family history of SIC5 (8%)3 (3%)0.1821 (4%)4 (11%)0.340
Insurance 0.1110.314
Private 58 (92%)76 (83%)25 (96%)33 (89%)
Medicare 5 (8%)11 (12%)1 (4%)4 (11%)
Medicaid 0 (0%)5 (5%)--
Provider0.000a0.030a
Provider 139 (62%)82 (89%)17 (65%)22 (59%)
Provider 213 (21%)4 (4%)8 (31%)5 (14%)
Provider 311 (17%)6 (7%)1 (4%)10 (27%)
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)0.018a45 (40-61)50 (37-60)0.772
Female37 (64%)63 (65%)0.88426 (81%)11 (42%)0.002a
Race0.4310.498
White 54 (93%)85 (88%)30 (94%)24 (92%)
Black1 (2%)2 (2%)0 (0%)1 (4%)
Asian3 (5%)4 (4%)2 (6%)1 (4%)
Other0 (0%)2 (2%)--
Unknown0 (0%)4 (4%)--
Hispanic ethnicity0 (0%)2 (2%)0.336---
AJ ancestry3 (5%)13 (13%)0.2293 (9%)0 (0%)0.006a
Lynch syndrome gene0.6400.171
MLH18 (14%)21 (22%)3 (9%)5 (19%)
MSH2 or EPCAM17 (29%)23 (24%)9 (28%)8 (31%)
MSH617 (29%)28 (29%)13 (41%)4 (15%)
PMS216 (28%)25 (26%)7 (22%)9 (35%)
Personal history of cancer29 (50%)41 (42%)0.34917 (53%)12 (46 %)0.597
Family history of UTC15 (26%)20 (21%)0.47711 (34%)4 (15%)0.118
Insurance0.6310.402
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 136 (62%)85 (88%)0.001a28 (88%)8 (31%)0.000 a
Provider 212 (21%)5 (5%)2 (6%)10 (38%)
Provider 310 (17%)7 (7%)2 (6%)8 (31%)