Table 1.
Characteristics of patients included from the three registers
| UK JIA Biologics Registers: registered by 6 January 2021 | BiKeR/JuMBO: registered by 10 November 2019 | Pharmachild prospective cohort: registered by 12 November 2020 | |
|---|---|---|---|
| Number of patients, n | 2963 | 1541 | 3562 |
| Female, n (%) | 2014 (68%) | 1046 (68%) | 2476 (70%) |
| ILAR category, n (%) | |||
| Oligoarticular | 880 (30%) | 415 (27%) | 1426 (40%) |
| Oligoarticular (persistent) | 359 (12%) | 137 (9%) | 903 (25%) |
| Oligoarticular (extended) | 521 (18%) | 278 (18%) | 523 (15%) |
| Polyarticular RF− | 962 (32%) | 414 (27%) | 913 (26%) |
| Polyarticular RF+ | 242 (8%) | 129 (8%) | 148 (4%) |
| Systemic | 259 (9%) | 82 (5%) | 370 (10%) |
| Psoriatic | 189 (6%) | 131 (8%) | 120 (3%) |
| Enthesitis-related | 253 (9%) | 315 (20%) | 333 (9%) |
| Undifferentiated | 94 (3%) | 54 (5%) | 252 (7%) |
| Unknown | 84 (3%) | 1 (<1%) | – |
| At registration | |||
| Age (years), median (IQR) | 11 (6, 14) | 14 (12, 16) | 11 (7–14) |
| Disease duration (years) from diagnosis, median (IQR) | 1 (0, 4), N = 2894 | 3 (1, 7), N = 1531 | 3 (1–6) |
| Disease activity, median (IQR) | |||
| Active joint count (71-joint) | 4 (1, 8), N = 2724 | 4 (2, 8), N = 1537 | 1 (0, 4), N = 906 |
| Limited joint count (71-joint) | 3 (1, 6), N = 2658 | 4 (2, 9), N = 1537 | 1 (0, 4), N = 906 |
| Physician global assessment (10 cm) | 3 (2, 5), N = 1909 | 5 (3, 7), N = 1513 | 2 (0, 4), N = 906 |
| Parent (patient) assessment of well-being (10 cm) | 4 (1, 6), N = 1978 | 5 (3, 7), N = 1384 | 2 (0, 5), N = 668 |
| Functional ability | CHAQ (range 0–3) | CHAQ (range 0–3) | JAMAR |
| 0.9 (0.3, 1.5), N = 1871 | 0.5 (0.125, 1.00), N = 1395 | 2 (0, 6), N = 560 | |
| Pain VAS (10 cm) | 4 (1, 7), N = 1899 | 4 (2, 7), N = 1228 | 2 (0, 5), N = 619 |
| ESR (mm/h) | 13 (5, 30), N = 2444 | 16 (7, 35), N = 1451 | 12 (6, 28), N = 710 |
| CRP (mg/l) | 5 (4, 15), N = 2497 | 5.5 (2.1, 24) | 3 (1, 11) |
| N = 947 | N = 728 | ||
| JADAS-71 | 13 (7, 20), N = 1337 | 15 (10, 20), N = 1370 | 8 (2, 16), N = 510 |
| Varicella vaccination, n (%) | 95 (16%), N = 609 | 136 (56%), N = 241 | 376 (13%) N = 2934 |
| History of comorbidities, n (%) | |||
| Ever uveitis | 444 (16%), N = 2738 | 204 (13%) | 664 (19%), N = 3484 |
| Ever MAS (systemic JIA only) | 32 (24%), N = 136 | 2 (3.9%), N = 56 | 53 (14%), N = 366 |
| Had varicella infection | 750 (32%)b, N = 2351 | 98 (11%), N = 871 | 1120 (49%), N = 2279 |
| Ever tuberculosis | 12 (0.6%), N = 1900 | 0 (0.0%) | 46 (1.5%)a, N = 3005 |
| Drugs, n (%) | |||
| MTX (monotherapy) | 1092 (37%) | 544 (35%) | 1084 (30%) |
| Etanercept | 1105 (37%) | 885 (57%) | 738 (20.7%) |
| Adalimumab | 430 (15%) | 86 (6%) | 397 (11.1%) |
| Infliximab | 123 (4%) | 0 (0%) | 47 (1.3%) |
| Anakinra | 37 (1%) | 1 (<1%) | 65 (1.8%) |
| Rituximab | 9 (<1%) | 0 (0%) | 1 (<1%) |
| Tocilizumab | 138 (5%) | 18 (2%) | 117 (3%) |
| Abatacept | 25 (1%) | 3 (<1%) | 104 (3%) |
| Golimumab | 1 (<1%) | 1 (<1%) | 6 (<1%) |
| Baricitinib | 1 (<1%) | 0 | 0 (0%) |
| Secukinumab | 3 (<1%) | 0 | 0 (0%) |
| Canakinumab | 0 (0%) | 3 (<1%) | 34 (1%) |
| At most recent follow-up | |||
| Follow-up from JIA diagnosis (years, not necessarily in the study), median (IQR) | 5 (3, 9) N = 2926 | 14 (7, 18) N = 1514 | 6 (3–9) |
| Mean (s.d.) | 6.5 (4.6) | 13.2 (6.1) | 6.5 (4.5) |
| Age (years), median (IQR) | 14 (10–17) | 22 (19–25) | 13 (9–17) |
| Comorbidities, n (%) | |||
| Ever uveitis | 556 (19%) | 238 (15%) | 676 (19%) N = 3484 |
| Ever MAS (systemic JIA only) | 37 (15%) N = 250 | 5 (6%) N = 82 | 62 (17%) N = 366 |
| Ever varicella infection | 822 (37%)b N = 2238 | 127 (15%) N = 871 | 1166 (50%) N = 2312 |
| Ever tuberculosis | 17 (0.6%) | 2 (0.1%) N = 1541 | 54 (1.8%)a N = 3006 |
a
Including latent tuberculosis.
b
Identified at baseline as either ticked varicella infection, or were chicken pox immune (providing they had not had the vaccination).