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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) - - -
  1. INQoL total mean (SD) = 19.1 (13.1)
  2. * Statistical significance at p < 0.05