Table 1 Demographics of study participants with autoinflammatory diseases (AID) and their family members
From: Living with autoinflammatory diseases: identifying unmet needs of children, adolescents and adults
Total study cohort of AID patients and family members N = 83 | |
|---|---|
Patients with AID (%) | 48 (58%) |
Male: female | 30:18 |
Median age at study in years (range) | 19 (5–78) |
• Children (5 < 14 years), N (%) | • 14 (29%) |
• Adolescents (14–21 years), N (%) | • 9 (19%) |
• Adults (> 21 years), N (%) | • 25 (52%) |
AID subtypes | |
• Cryopyrin-Associated Periodic Syndrome (CAPS), N (%) | • 37 (77%) |
- Familial cold-associated syndrome (FCAS) | 0 |
- Muckle-Wells-Syndrome (MWS) | 35/37 |
- Neonatal-onset multisystem inflammatory disease (NOMID)/chronic infantile neurologic, cutaneous and articular (CINCA) syndrome | 2/37 |
• Familial Mediterranean Fever (FMF), N (%) | • 10 (21%) |
• other AIDs, N (%) | • 1 (2%) |
Total AID family members, N (%) | 35 (42%) |
Focus groups | |
Total number of focus groups | 10 |
Total participants of focus groups (%) | 78 (94%) |
• AID patients, N (%) | • 45 (58%) |
○ Children/adolescents N (%) | ○ 19 (24%) |
○ Adults, N (%) | ○ 26 (33%) |
• AID family members N (%) | ○ 33 (42%) |
“Impact and unmet needs in AID” questionnaires | |
Total questionnaires completed (%) | 40/43 (93%) |
• Adolescent and adult AID patients | • 40 |
Male: female | • 21:18 (no response in one) |
Inception cohort “Pilot School Intervention in AID” | |
Total number of participants | 18 |
• Children and adolescents with AID, N (%) | • 9 (50%) |
• AID parents, N (%) | • 9 (50%) |
Male: female | 6:12 |
AID patients median age in years (range) | 9 years (7-16) |