Table 2. Psychological impact of diagnosis on people affected by RDs in Spain.
| With diagnostic delay % (n) | Diagnosed within a year % (n) | p value (Chi-squared test) | OR (95%CI) | |||
|---|---|---|---|---|---|---|
| SOCIAL AND FAMILY ENVIRONMENT (BLOCK II) | ||||||
| Social isolation (n = 512) | Got worse | 26.7 (89) | 36.3 (65) | 0.033* | 0.7 (0.4–1.0) | |
| Stayed the same** | 55.3 (184) | 49.7 (89) | ||||
| Got better | 14.4 (48) | 8.4 (15) | 1.5 (0.8–2.9) | |||
| Not applicable | 3.6 (12) | 5.6 (10) | ||||
| Care provided by family (n = 511) | Got worse | 7.7 (26) | 6.9 (12) | 0.893 | 1.2 (0.6–2.5) | |
| Stayed the same** | 56 (188) | 59.4 (104) | ||||
| Got better | 34.2 (115) | 32 (56) | 1.1 (0.8–1.7) | |||
| Not applicable | 2.1 (7) | 1.7 (3) | ||||
| Family relationships (n = 519) | Got worse | 11.7 (40) | 12.9 (23) | 0.652 | 0.9 (0.5–1.5) | |
| Stayed the same** | 64.8 (221) | 62.9 (112) | ||||
| Got better | 21.7 (74) | 23.6 (42) | 0.9 (0.6–1.4) | |||
| Not applicable | 1.8 (6) | 0.6 (1) | ||||
| Couple’s relationship (n = 500) | Got worse | 17.2 (56) | 18.4 (32) | 0.329 | 1.0 (0.6–1.7) | |
| Stayed the same** | 47.5 (155) | 51.7 (90) | ||||
| Got better | 17.5 (57) | 18.4 (32) | 1.0 (0.6–1.7) | |||
| Not applicable | 17.8 (58) | 11.5 (20) | ||||
| PSYCHOLOGICAL CARE AND HEALTH STATUS (BLOCK III) | ||||||
| Need for psychological care before diagnosis (n = 524) | No | 63.8 (219) | 76.8 (139) | 0.002* | ||
| Yes | 36.2 (124) | 23.2 (42) | 1.9 (1.2–2.8) | |||
| Need for psychological care after diagnosis (n = 524) | Has decreased | 11.1 (38)) | 7.7 (14) | 0.225 | 1.4 (0.7–2.6) | |
| Stayed the same** | 55.7 (191 | 52.5 (95)) | ||||
| Has increased | 33.2 (114) | 39.8 (72) | 0.8 (0.5–1.2) | |||
| Receiving psychological care (n = 524) | No** | 45.5 (156) | 53.6 (97) | 0.077 | ||
| Yes | 54.5 (187) | 46.4 (84) | 1.4 (1.0–2.0) | |||
| Health status within 12 months after diagnosis (n = 524) | Got worse | 27.7 (95) | 35.4 (64) | 0.011* | 0.6 (0.4–0.9) | |
| Stayed the same** | 51.9 (178) | 38.1 (69) | ||||
| Got better | 20.4 (70) | 26.5 (48) | 0.6 (0.4–0.9) | |||
| PSYCHOLOGICAL ASPECTS (BLOCK IV) | ||||||
| Depressed mood (n = 524) | Got worse | 46.9 (161) | 54.1 (98) | 0.227 | 0.8 (0.5–1.2) | |
| Stayed the same** | 39.4 (135) | 35.9 (65) | ||||
| Got better | 13.7 (47) | 9.9 (18) | 1.3 (0.7–2.3) | |||
| Frustration (n = 524) | Got worse | 50.1 (172) | 51.9 (94) | 0.002* | 1.2 (0.8–1.8) | |
| Stayed the same** | 33.2 (114) | 42 (76) | ||||
| Got better | 16.6 (57) | 6.1 (11) | 3.4 (1.7–7.1) | |||
| Anxiety (n = 524) | Got worse | 45.8 (157) | 53.6 (97) | 0.056 | 0.8 (0.6–1.2) | |
| Stayed the same** | 38.5 (132) | 37.6 (68) | ||||
| Got better | 15.7 (54) | 8.8 (16) | 1.7 (0.9–3.3) | |||
| Fear (n = 524) | Got worse | 44 (151) | 51.9 (94) | 0.018* | 0.9 (0.6–1.3) | |
| Stayed the same** | 40.5 (139) | 40.9 (74) | ||||
| Got better | 15.5 (53) | 7.2 (13) | 2.2 (1.1–4.3) | |||
| Uncertainty about the future (n = 524) | Got worse | 64.4 (221) | 68.5 (124) | 0.312 | 0.9 (0.6–1.4) | |
| Stayed the same** | 25.7 (88) | 25.4 (46) | ||||
| Got better | 9.9 (34) | 6.1 (11) | 1.6 (0.7–3.5) | |||
| Irritability (n = 524) | Got worse | 40.8 (140) | 42.5 (77) | 0.007* | 1.1 (0.7–1.6) | |
| Stayed the same** | 46.9 (161) | 53.6 (97) | ||||
| Got better | 12.2 (42) | 3.9 (7) | 3.6 (1.5–8.5) | |||
| Concentration on everyday life (n = 524) | Got worse | 40.2 (138) | 47 (85) | 0.006* | 0.9 (0.6–1.3) | |
| Stayed the same** | 47.5 (163) | 49.2 (89) | ||||
| Got better | 12.2 (42) | 3.9 (7) | 3.3 (1.4–7.7) | |||
| Difficulty in making decisions (n = 524) | Got worse | 28.3 (97) | 34.3 (62) | 0.055 | 0.8 (0.6–1.3) | |
| Stayed the same** | 55.1 (189) | 56.4 (102) | ||||
| Got better | 16.6 (57) | 9.4 (17) | 1.8 (1.0–3.3) | |||
| Difficulty falling sleep (n = 524) | Got worse | 41.4 (142) | 44.2 (80) | 0.672 | 0.9 (0.6–1.3) | |
| Stayed the same** | 51.3 (176) | 50.3 (91) | ||||
| Got better | 7.3 (25) | 5.5 (10) | 1.3 (0.6–2.8) | |||
| Muscle tension (n = 524) | Got worse | 44.3 (152) | 49.7 (90) | 0.307 | 0.8 (0.6–1.2) | |
| Stayed the same** | 47.8 (164) | 45.3 (82) | ||||
| Got better | 7.9 (27) | 5 (9) | 1.5 (0.7–3.3) | |||
| Changes in eating habits (decrease or increase in appetite) (n = 524) | Got worse | 32.9 (113) | 37 (67) | 0.224 | 0.9 (0.6–1.3) | |
| Stayed the same** | 58.9 (202) | 58.6 (106) | ||||
| Got better | 8.2 (28) | 4.4 (8) | 1.8 (0.8–4.2) | |||
Not applicable means that the information requested does not apply to the person who is filling out the form.
RD: rare disease
* An asterisk indicates significance at p<0.05
** Reference group