Table 1.
A comparison of the clinical characteristics of the Vasculitis Patient-Powered Research Network and Vasculitis Clinical Research Consortium eosinophilic granulomatosis with polyangiitis cohorts.
| Characteristics | VPPRNa cohort (N=195) | VCRCb cohort (N=354) | P value | |
| Sex, n (%) | ||||
|
|
Female | 135 (69.2) | 209 (59) | .02 |
|
|
Male | 60 (30.8) | 145 (40.9) | .02 |
| Age at diagnosis in years, mean (SD) | 47.3 (14.3) | 50.0 (14.2) | .03 | |
| Positive test for ANCAc, n (%)d | 64 (48.9) | 123 (38.9) | .05 | |
| Manifestations, n (%)e,f | ||||
|
|
Asthma | 177 (96.2) | 329 (92.9) | .13 |
|
|
Coughed up blood or bleeding in the lungs/alveolar hemorrhage | 24 (14.4) | 21 (5.9) | .001 |
|
|
Problems with your lungs/lung involvement | 126 (72.4) | 296 (83.6) | .003 |
|
|
Problems with your nose or sinuses/nasal involvement | 165 (92.2) | 292 (82.5) | .003 |
|
|
Fever | 82 (55.4) | 62 (17.5) | <.001 |
|
|
Weight loss | 95 (55.6) | 106 (29.9) | <.001 |
|
|
Severe joint pain or swelling/arthralgia(s) | 116 (67.1) | 140 (39.5) | <.001 |
|
|
Rash/skin | 125 (70.6) | 106 (29.9) | <.001 |
|
|
Inflammation of the heart lining/cardiac | 44 (28.8) | 75 (21.2) | .06 |
|
|
Problems with your kidneys/renal disease | 39 (22.4) | 36 (10.2) | <.001 |
|
|
Numbness, tingling, trouble moving arms, hands, legs, or feet, or other forms of nerve damage/neurological | 155 (87.6) | 214 (60.5) | <.001 |
|
|
Inflammation in one or both eyes that required treatment/eye disease | 42 (26.1) | 31 (8.8) | <.001 |
|
|
Loss of blood supply to intestines or perforation/mesenteric ischemia | 10 (6.1) | 7 (2) | .02 |
|
|
Thrombosis | 24 (14) | 24 (6.8) | .007 |
| Follow-up time in years, mean (SD) | ||||
|
|
From diagnosis | 8.0 (6.8) | 7.0 (6.2) | .08 |
|
|
From enrollment | 2.2 (1.1) | 3.6 (3.5) | <.001 |
| Relapses, n (%) | ||||
|
|
Total since diagnosis | N/A | 175 (49.4) | N/Ag |
|
|
After enrollment | 63 (32.3) | 99 (35.7)h | .44 |
| Deaths, n (%) | 0 (0)i | 11 (4)h | N/A | |
| Treatments ever received, n (%)j | ||||
|
|
Systemic glucocorticoids | 195 (100) | 354 (100) | .99 |
|
|
Cyclophosphamide | 79 (40.5) | 115 (41.5)h | .83 |
|
|
Mepolizumab | 20 (10.3) | 25 (9)h | .65 |
|
|
Rituximab | 47 (24.1) | 29 (10.5)h | <.001 |
aVPPRN: Vasculitis Patient-Powered Research Network.
bVCRC: Vasculitis Clinical Research Consortium.
cANCA: antineutrophil cytoplasmic antibody.
dFor this category, N=131 for the VPPRN cohort and N=316 for the VCRC cohort. Percentages have been calculated accordingly.
eFor the VPPRN cohort, the N value for each category is the number of patients who responded yes or no (the response of “I don’t know” was excluded). The N values are as follows: asthma (N=184); coughed up blood or bleeding in the lungs (N=166); problems with your lungs (N=174); problems with your nose or sinuses (N=179); fever (N=148); weight loss (N=171); severe joint pain or swelling (N=173); rash (N=177); inflammation of the heart lining (N=153); problems with your kidneys (N=174); numbness, tingling, trouble moving arms, hands, legs, or feet, or other forms of nerve damage (N=177); Inflammation in one or both eyes that required treatment (N=161); loss of blood supply to intestines or perforation (N=165); thrombosis (N=171). The percentages have been calculated accordingly.
fFor this category, some items are presented as follows: phrasing in VPPRN database/phrasing in VCRC database.
gN/A: not applicable.
hData were available for 277 patients in the VCRC–Longitudinal Study (VCRC-LS). These percentages have been calculated accordingly.
iAll patients in the VPPRN logged into the portal and completed at least 1 form within 24 months prior to data extraction with none documented as lost to follow-up; captured follow-up losses and deaths in VPPRN are limited due to the inherent nature of the study design (privacy concerns associated with contacting treating physicians, family members, etc.).
jAdditional treatments for patients in the VCRC-LS (N=277) included azathioprine (n=145, 52.3%), methotrexate (n=109, 39.4%), and mycophenolate mofetil (n=25, 9%).