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Table 2 Demographic characteristics of YP and HCPs included in the study

From: Development of a benchmarking toolkit for adolescent and young adult rheumatology services (BeTAR)

  Phase 2 Phase 3 Phase 4 Phase 5
Total no. of YPa, n 38   27 28
Age    
 Median in years (range) 19 (15–24)   18 (12–24) 19 (12–24)
 Mean in years (SD) 19.1 (2.7) 18.5 (3) 18.8 (3.1)
Age of diagnosis    
 Median in years (range) 10 (1–16) 10 (1–16) 10.5 (2–15)
 Mean in years (SD) 9.5 (4.4) 9.4 (4.8) 10 (3.8)
Sex    
 Female, n (%) 31 (82) 18 (67) 17 (61)
 Male, n (%) 7 (18) 9 (33) 11 (39)
Ethnicity    
 White, n (%) 24 (63) 17 (63) 18 (64)
 Asian, n (%) 9 (24) 5 (19) 7 (25)
 Black, n (%) 3 (8) 3 (11) 3 (7)
 Other, n (%) 2 (5) 2 (7) 2 (4)
Type of diagnosis    
 JIA, n (%) 27 (71) 20 (74) 17 (61)
 JSLE, n (%) 7 (18) 4 (15) 4 (14)
 JDM, n (%) 4 (11) 3 (11) 7 (25)
Total no. of HCPsb, n   22   7
 Clinician, n (%) 16 (73) 5 (71)
 Clinical nurse specialists, n (%) 5 (23) 2 (29)
 Physiotherapist, n (%) 1 (4) 0
Years in practice   
 Median (range)   10.5 (1–34)   11 (3–34)
 Mean (SD)   13.3 (9.3)   14.5 (8.9)
  1. a Six YP took part in multiple phases of the study
  2. b Three HCPs took part in multiple phases of the study