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Table 1 Patients' sociodemographic and disease characteristics

From: Inclusion body myositis—health-related quality of life and care situation during phases of the “patience journey” in Germany: results from a qualitative study

Characteristic

Total

(n = 7)

[Min–Max; Mean]

Women

(n = 2)

[Min–Max; Mean]

Men

(n = 5)

[Min–Max; Mean]

Age (years)

66–81; 76.7

80; 80

66–81; 75.4

Duration since diagnosis (years)

2–17; 9.4

4–6; 5

2–17; 11.2

Age at symptom onset (years)

56–73; 62

62–73; 67.5

56–63; 59.8

Physical functioning (sIFA)

44–101; 87

89–94; 91.5

44–101; 85.6

ENMC diagnostic criteria

absolute; %

absolute

 Clinicopathologically defined IBM

4; 57%

 

4

 Clinically defined IBM

2; 29%

2

 

 Probable IBM

1; 14%

 

1

Mobility devices

absolute; %

absolute

 Canes to some extent

1; 14%

 

1

 Wheelchair to some extent (manual wheelchair)

3; 43%

2

1

 Completely wheelchair users (power wheelchair)

3; 43%

 

3

Severe patient relevant comorbidities prior to diagnosis

absolute

 Cervical damage due to motorcycle accident

 

1

 Gunshot wound to hand and foot

 

1

 Lesions of peroneal nerve due to an accident

 

1

 Cardiovascular disease

 

1

 Bronchial asthma

1

 

 Implantation of total knee endoprosthesis

1

 

Former socio-professional category

absolute; %

absolute

 Workers/employee

3; 43%

2

1

 Senior executive/higher intellectual professions

4; 57%

 

4

Type of health insurance

absolute; %

absolute

 Statutory

2; 29%

1

1

 Private

5; 71%

1

4

  1. ENMC European Neuromuscular Centre [26, 27]; The Sporadic Inclusion Body Myositis Physical Functioning Assessment (sIFA) [40, 41] is a PROM with a 0–10 (0 = no difficulty, 10 = unable to do) numerical rating scale with 11 items covering lower and upper body functioning and general functioning