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Table 1 Description of the sample of subjects who answered to PREM

From: Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: a Spanish cross-sectional study

Sample age (mean, SD) 38 (13.6)
Age paediatric subsample (mean, SD) 10.1 (3.4)
Age adults subsample (mean, SD) 41.4 (10.1)
Sex  
 Men (N, %) 227 (87.0)
 Women (N, %) 34 (13.0)
Diagnosis  
 The diagnosis is known (N, %) 239 (91.6)
 Addison's disease (N, %) 24 (10)
 Antiphospholipid syndrome (N, %) 9 (3.8)
 Ehlers-Danlos syndrome (N, %) 8 (3.3)
 Scleroderma (N, %) 4 (1.7)
 The diagnosis is not yet known (N, %) 22 (8.4)
 Time since the diagnosis is known (mean, SD) 7.8 (8.0)
Where they are usually receiving health care?  
 Hospital (N, %) 181 (69.3)
 Health center (N, %) 80 (30.7)
 Number of drugs they are taking regularly, paediatric subsample (media, SD) 2.7 (2.4)
 Number of times they have been admitted to hospital in the last year, paediatric subsample (media, SD) 0.9 (1.6)
 Number of drugs they are taking regularly, adults subsample (media, SD) 4.5 (3.3)
 Number of times they have been admitted to hospital in the last year, adults subsample (media, SD) 1.0 (2.3)