Table 1.
Participants’ characteristics and willingness to share genetic information for research.
| Patients (n = 159) |
Informal Carers (n = 478) |
Healthcare Professionals (n = 63) a |
|
|---|---|---|---|
| Sex | |||
| Female | 75 (47.2) | 376 (78.7) | 42 (66.7) |
| Male | 84 (52.8) | 102 (21.3) | 21 (33.3) |
| Age (years) | |||
| <18 | 89 (56.0) | 0 (0) | 0 (0) |
| 18–29 | 44 (27.7) | 47 (9.9) | 0 (0) |
| 30–49 | 20 (12.6) | 356 (75.1) | 29 (46.0) |
| >49 | 6 (3.8) | 71 (15.0) | 34 (54.0) |
| Educational level (years) | |||
| ≤12 | 151 (95.6) | 327 (68.8) | 0 (0) |
| >12 | 7 (4.4) | 148 (31.2) | 63 (100) |
| Country of origin | |||
| Portugal | 154 (96.9) | 447 (93.9) | 61 (96.8) |
| Other b | 5 (3.1) | 29 (6.1) | 2 (3.2) |
| Marital status | |||
| Married/living with partner | 16 (10.1) | 371 (77.9) | 50 (79.4) |
| Other c | 142 (89.9) | 105 (22.1) | 13 (20.6) |
| Occupation | |||
| Upper white-collar | 5 (3.2) | 144 (32.3) | 63 (100) |
| Lower white-collar | 7 (4.4) | 108 (24.2) | 0 (0) |
| Blue-collar | 9 (5.7) | 79 (17.7) | 0 (0) |
| Other d | 137 (86.7) | 115 (25.8) | 0 (0) |
| Perceived income adequacy | |||
| Insufficient/caution with expenses | 51 (35.4) | 267 (56.4) | 12 (19.4) |
| Enough to make ends meet/comfortable | 93 (64.6) | 206 (43.6) | 50 (80.6) |
| Involvement in patient organisations | |||
| No | 154 (98.1) | 446 (93.7) | 51 (82.3) |
| Yes | 3 (1.9) | 30 (6.3) | 11 (17.7) |
| Satisfaction with own health | |||
| Very unsatisfied/Unsatisfied | 16 (10.1) | 34 (7.1) | |
| Neither satisfied nor unsatisfied | 44 (27.7) | 79 (16.6) | -- |
| Satisfied/Very satisfied | 99 (62.3) | 364 (76.3) | |
| Willingness to share genetic information for research | |||
| Always willing/willing | 109 (70.3) | 320 (67.9) | -- |
| Other | 46 (29.7) | 151 (32.1) | -- |
| Interpersonal Trust, Md (P25–P75) | 4.7 (2.5–6.7) | 4.7 (3.0–6.3) | 6.0 (3.7–7.7) |
a includes physicians (n = 39), nurses (n = 16) and allied health professionals (n = 8). b includes Brazil (n = 9), France (n = 7), Angola (n = 5), Venezuela (n = 3), Mozambique (n = 3), Cape Verde (n = 2), Germany (n = 2), United Kingdom (n = 1), Switzerland (n = 1), São Tomé e Príncipe (n = 1) and South Africa (n = 1). One carer did not report the country of origin. c includes single (n = 204), widowed (n = 6), divorced (n = 42) and separated (married, but does not live with partner) participant (n = 4). d includes unemployed (n = 77), retired (n = 11), participants doing housework (n = 25), informal carers or members of a foster family (n = 5), participants who are pensioners or in a paid/unpaid leave (n = 12) and students (n = 122). Notes: Values are presented as count and proportions unless otherwise specified; in each variable, the total may not add 159 patients, 478 informal carers and 63 healthcare professionals due to missing values; the pro-portions may not add 100 due to rounding; Md—Median.