Table 6 Characteristics of patients’ and caregiver’s reports at INQoL interview; discrepancy scores are shown in bold (N = 64)
From: Disease awareness in myotonic dystrophy type 1: an observational cross-sectional study
INQoL items (range) | Subitems INQoL | Patient’s rating mean (SD) | Caregiver’s rating mean (SD) | Discrepancy mean (caregiver score – patient score) | N° pt. with reduced awareness of illness (%) |
|---|---|---|---|---|---|
1. Weakness (0–19) | - | 10.1 (5.4) | - | - |  |
2. Stiffening (0–19) | - | 7.4 (6) | - | - |  |
3. Pain (0–19) | - | 5.1 (6) | - | - |  |
4. Fatigue (0–19) | - | 8.9 (5.6) | - | - |  |
5. Activity (0–18) | - | 11.1 (8.3) | 10.9 (10.6) | 0.2 | 23 (35.9) |
6. Independence (0–18) | - | 6.2 (5.4) | 7.9 (5.6) | 1.7* | 24 (37.5) |
7. Relationships (0–24) | - | 6.8 (8.7) | 10.1 (11.8) | 3.3* | 27 (42.2) |
8. Emotional | Anxiety (0–6) | 2.3 (1.7) | 2.8 (1.9) | 0.5 | 7 (10.9) |
|  | Depression (0–6) | 1.8 (1.7) | 1.8 (1.7) | 0.0 | 6 (9.3) |
|  | Frustration (0–6) | 1.3 (1.7) | 1.8 (1.8) | 0.5 | 8 (12.5) |
|  | Self-esteem (0–6) | 1.1 (1.6) | 1.6 (1.7) | 0.5 | 7 (10.4) |
9. Physical appearance (0–18) | - | 5.6 (4.6) | - | - | - |