Table 5 Characteristics of patients, family members, and physicians (N = 107)
Parameters | Patients (n = 55) | Family members (n = 13) | Physicians (n = 33) | |||
|---|---|---|---|---|---|---|
Sex | ||||||
Male | 18 | 5 | 23 | |||
Female | 37 | 8 | 10 | |||
Age | ||||||
Average | 52 | 44 | 48 | |||
Maximum | 85 | 60 | 68 | |||
Minimum | 18 | 28 | 31 | |||
Civil status | ||||||
No specification | – | 1 | – | |||
Married/cohabiting | 34 | 9 | – | |||
Single | 11 | 1 | – | |||
Divorced/Separated | 7 | 1 | – | |||
Widowed | 3 | 1 | – | |||
Educational qualification | ||||||
Technical collage/ university degree | 14 | 5 | – | |||
Abitur | 8 | 5 | – | |||
Advanced technical college degree | 5 | 0 | – | |||
Secondary education | 18 | 1 | – | |||
Secondary modern school qualification | 10 | 2 | – | |||
Members of the household | – | |||||
Average | 2,09 | 3,58 | – | |||
Maximum | 5 | 5 | – | |||
Minimum | 1 | 1 | – | |||
Age at diagnosis | ||||||
Average | 37 | 8 | – | |||
Maximum | 74 | 39 | – | |||
Minimum | 0 | 0 | – | |||
Disease severity | ||||||
No specification | – | 0 | – | |||
Low | 5 | 3 | – | |||
Medium | 26 | 2 | – | |||
Severe | 21 | 7 | – | |||
Profession | ||||||
Employed | 22 | 9 | – | |||
Unemployable | 12 | 1 | – | |||
Pensioner | 18 | – | – | |||
Student/Scholar | 2 | – | – | |||
Homemaker | – | 2 | – | |||
Special circumstances | 1 | – | – | |||
Medical rare disease experience / RD guide | – | – | 6 | |||
Regional aspects | ||||||
Rural | – | – | 3 | |||
Urban | – | – | 7 | |||
Metropolitan | – | – | 8 | |||
Practice form | ||||||
Single practice | – | – | 7 | |||
Group practice | – | – | 11 | |||
Clinic level | ||||||
Basic | – | – | 4 | |||
Regular | – | – | 0 | |||
Specialist | – | – | 1 | |||
Maximum medical care | – | – | 4 | |||