Table 1.
Demographic and clinical characteristics of index cases and relatives by syndrome.
| Index Cases | Total n = 304 (% or ± SD) |
HBOC n = 238 (% or ± SD) |
LS n = 66 (% or ± SD) |
HBOC vs. LS p-Values a |
|---|---|---|---|---|
| Gender | F = 255 (83.9) | F = 214 (89.9) | F = 41 (62.1) | <0.01 |
| Caucasian origin | 254 (83.6) | 199 (83.6) | 55 (83.3) | 1 |
| Age | 52.3 (±12.6) | 52.1 (±12.2) | 52.9 (±14.0) | 0.67 |
| Education level (12th years of education or higher) | 258 (84.9) | 206 (86.6) | 52 (78.8) | 0.17 |
| Married or living as married | 224 (73.7) | 183 (76.9) | 41 (62.1) | 0.02 |
| Cancer affected c | 195 (64.1) | 145 (60.9) | 50 (75.8) | 0.04 |
| Breast cancer (invasive) | 95 (39.9) | 3 (4.5) | - | |
| Ovarian cancer | 29 (12.2) | 4 (6.1) | - | |
| Prostate cancer | 1 (0.4) | 2 (3.0) | - | |
| Pancreatic cancer | 0 | 0 | - | |
| Colon or rectal cancer | 2 (0.9) | 30 (45.5) | - | |
| Endometrial cancer | 5 (2.1) | 8 (12.1) | - | |
| Other d | 49 (20.6) | 13 (19.7) | - | |
| Age at 1st cancer diagnosis | 47.7 (±11.7) | 47.4 (±11.7) | 48.3 (±11.7) | 0.80 |
| Genetic testing ≤5 years ago | 137 (45.1) | 108 (45.4) | 29 (43.9) | 0.95 |
| Has a routine source of care (ref: >2 healthcare professionals) | 288 (94.7) | 223 (93.7) | 65 (95.5) | 0.22 |
| Provider seen most often is specialist (ref: generalist) | 175 (57.6) | 150 (63.0) | 25 (37.9) | <0.01 |
| Out of pocket cost is a barrier to accessing care | 18 (5.9) | 17 (7.1) | 1 (1.5) | 0.14 b |
| Relatives |
Total n = 115
(% or ± SD) |
HBOC n = 101
(% or ± SD) |
LS n = 14
(% or ± SD) |
HBOC vs. LS
p-values a |
| Gender | F = 78 (67.8) | F = 69 (68.3) | F = 9 (64.3) | 1 |
| Caucasian origin | 108 (93.9) | 94 (93.1) | 14 (100) | 0.67 |
| Age | 49.7 (±16.9) | 50.4 (±17.2) | 44.6 (±14.3) | 0.19 |
| Education level (12th years of education or higher) | 104 (90.4) | 91 (90.1) | 13 (92.9) | 1 |
| Married or living as married | 84 (73.0) | 78 (77.2) | 6 (42.9) | 0.34 b |
| Cancer affected | 23 (20.0) | 19 (18.8) | 4 (28.6) | 0.50 b |
| Breast cancer (invasive) | 13 (12.9) | 0 | - | |
| Ovarian cancer | 3 (3.0) | 2 (14.3) | - | |
| Prostate cancer | 1 (1.0) | 0 | - | |
| Pancreatic cancer | 0 | 0 | - | |
| Colon or rectal cancer | 0 | 1 (7.1) | - | |
| Endometrial cancer | 0 | 0 | - | |
| Other d | 7 (6.9) | 2 (14.3) | - | |
| Age at 1st cancer diagnosis | 48.4 (±11.1) | 52.7 (±12.8) | 46.4 (±8.8) | 0.47 |
| Had genetic testing | 71 (61.7) | 61 (60.4) | 10 (71.4) | 0.82 b |
| Familial pathogenic variant identified | 54 (47.0) | 47 (46.5) | 7 (50.0) | 1 b |
| Familial pathogenic variant excluded | 17 (14.8) | 14 (13.9) | 3 (21.4) | 0.46 b |
| Genetic testing ≤5 years ago | 32 (27.8) | 28 (27.7) | 4 (28.6) | 1 b |
| Has a routine source of care (ref: >2 healthcare professionals) | 104 (90.4) | 93 (92.1) | 11 (78.6) | 0.26 |
| Provider seen most often is specialist (ref: generalist) | 45 (39.1) | 43 (42.6) | 2 (14.3) | 0.24 b |
| Out of pocket cost is a barrier to access care | 5 (4.3) | 3 (3.0) | 2 (14.3) | 0.13 b |
a Two proportion z-test; b Fisher’s exact test; c The number of cancer diagnoses is larger than the number of individuals affected with cancer because some respondents reported more than one diagnosis; d Includes brain, lung, stomach, gallbladder, liver, small intestine, kidney, urinary tract, and cervix; Abbreviations: F, female; SD, standard deviation; Bold = significant two-tailed p value ≤ 0.05.