Table 3.
Chi‐square tests of differences between sociodemographic and clinical variables per survey item
| Do you wish to be informed about genetic risks? | General population sample | Patient sample | |||||||
|---|---|---|---|---|---|---|---|---|---|
| Treatable condition | Untreatable condition | In both treatable and untreatable conditions | |||||||
| Preferred to be informed | N (%) | p | Effect size (V)d | N (%) | p | Effect size (V) | N (%) | p | Effect size (V) |
| Gender | |||||||||
| Males | 495 (96.7) | .008a | Weak | 423 (86.0) | .560 | Weak | NA | ||
| Females | 464 (99.1) | 377 (87.5) | |||||||
| Education level | |||||||||
| Low | 293 (30.6) | .031 | Weak | 249 (31.1) | .142 | Weak | NA | ||
| Moderate | 389 (40.6) | 333 (41.6) | |||||||
| High | 277 (28.9) | 218 (27.3) | |||||||
| Parenthoode | |||||||||
| Yes | 596 (97.4) | .257 | Weak | 504 (87.3) | .423 | Weak | NA | ||
| No | 353 (98.6) | 289 (85.5) | |||||||
| Religion | |||||||||
| Yes | 340 (96.9) | .114 | Weak | 283 (84.2) | .107 | Weak | NA | ||
| No | 619 (98.4) | 517 (88.1) | |||||||
| Which relatives should be informed? | In both treatable and untreatable conditions | In both treatable and untreatable conditions | ||||
|---|---|---|---|---|---|---|
| At first first‐degree relatives, subsequently further‐degree relatives | N (%) | p | Effect size (V) | N (%) | p | Effect size (V) |
| Gender | ||||||
| Males | 254 (48.7) | .001a | Weak | 36 (49.3) | .045 | Weak |
| Females | 277 (57.9) | 144 (54.8) | ||||
| Education level | ||||||
| Low | 137 (44.1) | <.001a | Weak | 12 (54.5) | .721 | Weak |
| Moderate | 200 (50.3) | 89 (53.6) | ||||
| High | 194 (66.7) | 79 (53.4) | ||||
| Parenthoode | ||||||
| Yes | 317 (51.1) | .378 | Weak | 124 (51.0) | .003c | Moderate |
| No | 206 (55.7) | 56 (60.2) | ||||
| Religion | ||||||
| Yes | 189 (52.6) | .121 | Weak | 62 (54.4) | .151 | Weak |
| No | 342 (53.4) | 118 (53.2) | ||||
| Patient type | ||||||
| Affected | NA | 121 (53.5) | .196 | Weak | ||
| Carrier | 32 (50.0) | |||||
| Non‐carrier | 27 (58.7) | |||||
| Who should inform at‐risk relatives? | Treatable condition | Untreatable condition | In both treatable and untreatable conditions | ||||||
|---|---|---|---|---|---|---|---|---|---|
| By proband and/or HCP | N (%) | p | Effect size (V) | N (%) | p | Effect size (V) | N (%) | p | Effect size (V) |
| Gender | |||||||||
| Males | 263 (52.1) | <.001a | Weak | 247 (48.1) | <.001b | Weak | 34 (48.6) | .244 | Weak |
| Females | 286 (47.9) | 266 (57.5) | 119 (47.0) | ||||||
| Education level | |||||||||
| Low | 172 (55.3) | .001a | Weak | 166 (56.3) | .001b | Weak | 10 (45.5) | .525 | Weak |
| Moderate | 228 (57.3) | 216 (56.1) | 67 (42.4) | ||||||
| High | 149 (51.2) | 131 (46.3) | 76 (53.1) | ||||||
| Parenthoode | |||||||||
| Yes | 347 (56.3) | .545 | Weak | 314 (53.0) | .929 | Weak | 98 (42.1) | .014 | Weak |
| No | 200 (54.3) | 196 (54.3) | 55 (61.1) | ||||||
| Religion | |||||||||
| Yes | 187 (52.2) | .096 | Weak | 172 (50.1) | .008b | Weak | 46 (41.4) | .165 | Weak |
| No | 362 (56.9) | 341 (55.0) | 107 (50.5) | ||||||
| Patient type | |||||||||
| Affected | NA | NA | 94 (43.4) | .280 | Weak | ||||
| Carrier | 36 (58.1) | ||||||||
| Non‐carrier | 23 (52.3) | ||||||||
| How should ethical issues be handled? | Treatable condition | Untreatable condition | In both treatable and untreatable conditions | ||||||
|---|---|---|---|---|---|---|---|---|---|
| Contact details of relatives may be looked up by HCPs in registers | N (%) | p | Effect size (V) | N (%) | p | Effect size (V) | N (%) | p | Effect size (V) |
| Gender | |||||||||
| Males | 263 (51.1) | .547 | Weak | 237 (46.1) | .008b | Weak | 29 (42.6) | .487 | Weak |
| Females | 248 (53.0) | 259 (55.5) | 116 (46.0) | ||||||
| Education level | |||||||||
| Low | 178 (58.0) | .110 | Weak | 158 (51.5) | .002b | Weak | 8 (38.1) | .881 | Weak |
| Moderate | 199 (51.0) | 198 (50.5) | 76 (48.1) | ||||||
| High | 134 (46.9) | 140 (49.6) | 61 (43.3) | ||||||
| Parenthoode | |||||||||
| Yes | 332 (54.5) | .003a | Weak | 301 (49.5) | .002b | Weak | 102 (44.0) | .427 | Weak |
| No | 176 (48.2) | 190 (52.3) | 43 (48.9) | ||||||
| Religion | |||||||||
| Yes | 204 (58.1) | .013 | Weak | 184 (52.4) | .561 | Weak | 47 (43.5) | .864 | Weak |
| No | 307 (48.6) | 312 (49.5) | 98 (46.2) | ||||||
| Patient type | |||||||||
| Affected | NA | NA | 95 (44.6) | .052 | Weak | ||||
| Carrier | 26 (41.3) | ||||||||
| Non‐carrier | 24 (54.5) | ||||||||
| In both treatable and untreatable conditions | In both treatable and untreatable conditions | |||||
|---|---|---|---|---|---|---|
| Children of relatives who decide against predictive DNA testing should be informed | N (%) | p | Effect size (V) | N (%) | p | Effect size (V) |
| Gender | ||||||
| Males | 335 (67.4) | .002a | Weak | 34 (47.9) | .048 | Weak |
| Females | 296 (64.8) | 161 (61.7) | ||||
| Education level | ||||||
| Low | 218 (72.7) | .006a | Weak | 15 (68.2) | .094 | Weak |
| Moderate | 253 (66.4) | 99 (60.7) | ||||
| High | 160 (58.6) | 81 (55.1) | ||||
| Parenthoode | ||||||
| Yes | 386 (65.6) | .790 | Weak | 148 (61.9) | .137 | Weak |
| No | 241 (67.6) | 47 (50.5) | ||||
| Religion | ||||||
| Yes | 227 (66.4) | .953 | Weak | 63 (55.8) | .697 | Weak |
| No | 404 (66.0) | 132 (60.3) | ||||
| Patient type | ||||||
| Affected | NA | 133 (59.6) | .136 | Weak | ||
| Carrier | 35 (54.7) | |||||
| Non‐carrier | 27 (60.0) | |||||
| Treatable condition | Untreatable condition | In both treatable and untreatable conditions | |||||||
|---|---|---|---|---|---|---|---|---|---|
| Relatives should be directly informed when proband does not inform them | N (%) | p | Effect size (V) | N (%) | p | Effect size (V) | N (%) | p | Effect size (V) |
| Gender | |||||||||
| Males | 301 (57.7) | <.001a | Weak | 328 (62.8) | .023 | 0.087 | 25 (36.2) | .065 | Weak |
| Females | 306 (64.0) | 325 (68.0) | 112 (44.1) | ||||||
| Education level | |||||||||
| Low | 176 (56.6) | .021 | Weak | 211 (678) | .386 | 0.046 | 7 (31.8) | .520 | Weak |
| Moderate | 257 (64.6) | 265 (66.6) | 69 (43.7) | ||||||
| High | 174 (59.8) | 177 (60.8) | 61 (42.7) | ||||||
| Parenthoode | |||||||||
| Yes | 365 (58.9) | .174 | Weak | 404 (65.2) | .967 | 0.008 | 102 (43.6) | .298 | Weak |
| No | 236 (63.8) | 243 (65.7) | 35 (39.3) | ||||||
| Religion | |||||||||
| Yes | 198 (55.2) | .011 | Weak | 219 (61.0) | .073 | 0.072 | 40 (36.4) | .089 | Weak |
| No | 409 (63.8) | 434 (67.7) | 97 (45.5) | ||||||
| Patient type | |||||||||
| Affected | NA | NA | 77 (35.8) | .005c | Weak | ||||
| Carrier | 37 (58.7) | ||||||||
| Non‐carrier | 23 (51.1) | ||||||||
NA, not applicable, survey item not included in the survey, or comparison of treatable and untreatable conditions; N (%): percentage within category
a
Considered significant based on the Bonferroni‐adjusted p‐level of p < .010 (0.05/5)
b
considered significant based on the Bonferroni‐adjusted p‐level of p < .013 (0.05/4)
c
considered significant based on the Bonferroni‐adjusted p‐level of p < .008 (0.05/6). Open answer categories were not included in the chi‐square analysis due to the small numbers resulting in the chi‐square analyses being not appropriate.
d
Effect size using Cramer's V: weak effect size = Cramer's V < 0.20; moderate effect size = Cramer's V = 0.20–0.30; strong effect size = Cramer's V > 0.30
e
Due to missing values regarding parenthood (unknown: N = 10) in the general population sample, the total numbers differ from Table 2.