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Table 3 Psychological distress of adult patients presenting at a center for rare and undiagnosed diseases and comparative data

From: Psychological distress of adult patients consulting a center for rare and undiagnosed diseases: a cross-sectional study

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

  
  1. Notes. Source, sample size, instrument; data from Germany if not further specified: an=300, PHQ-9,GAD-7 [6]; bn=86, PHQ-9, GAD-7, Spain [49]; cn=113,928, PHQ-9, GAD-7 [50]; dn=5018, PHQ-9 [34]; en=15,704, PHQ-2, GAD-7 [47]; fn=9250, PHQ-15 [51];gn=2306, SSD-12 [37]; hn=2531, SSS-8, WI-7 [52]