Table 3.
Psychological distress of adult patients presenting at a center for rare and undiagnosed diseases and comparative data
| Psychological distress | Study sample | Patients diagnosed with a rare disease | General population |
|---|---|---|---|
| Depression (PHQ-8) | |||
| mean (SD) | 8.9 (5.2) | 4.1 (3.9)c | |
| range | 0–24 | ||
| positive screening for a depressive disorder (PHQ-8 ≥ 10) | 66 (40.7%) | 42%a; 30%b | 5.6%d |
| no significant depressive symptoms (0–4) | 33 (20.4%) | 34%b | 76.4%d |
| mild (5–9) | 63 (38.9%) | 36%b | 18.1%d |
| moderate (10–14) | 45 (27.8%) | 14%b | 4.3%d |
| moderately severe (15–19) | 15 (9.3%) | 9%b | 1.3%d |
| severe (20–24) | 6 (3.7%) | 7%b | |
| missing | 5 | ||
| Anxiety (GAD-7) | |||
| mean (SD) | 6.4 (5.5) | 3.36 (3.4)c | |
| range | 0–20 | ||
| positive screening for anxiety disorder (GAD-7 ≥ 10) | 44 (27.5%) | 23%a; 26%b | 16.6%e |
| minimal (0–4) | 77 (48.1%) | 30%b | 55.1%e |
| mild (5–9) | 39 (24.4%) | 44%b | 28.1%e |
| moderate (10–14) | 27 (16.9%) | 14%b | 9.6%e |
| severe (15–21) | 17 (10.6%) | 12%b | 7.0%e |
| missing | 7 | ||
| Somatic symptom severity (PHQ-15) | |||
| mean (SD) | 12.1 (5.8) | 5.5 (3.9)f | |
| range | 0–26 | ||
| minimal (1–4) | 13 (8.5%) | 46.8%f | |
| low (5–9) | 41 (26.8%) | 38.3%f | |
| medium (10–14) | 45 (29.4%) | 11.8%f | |
| high (15–30); (PHQ-15 ≥ 15) | 53 (34.6%) | 3.1%f | |
| missing | 14 | ||
| Patients’ perceptions of their symptom-related thoughts, feelings, and behaviors (SSD-12) | |||
| mean (SD) | 24.5 (10.8) | 7.9 (9.3)g | |
| range | 0–47 | 0-48 g | |
| high psychological burden (above 90% quantile cut-off of respective age-group) | 93 (60%) | ||
| missing | 10 | ||
| Positive screening for Somatic Symptom Disorder (PHQ-15 ≥ 9 & SSD-12 ≥ 23) | 67 (45%) | 14,1%h | |
| missing | 18 |