Table 2 Unmet needs in autoinflammatory diseases (AIDs): Results from adolescent and adult patients’ questionnaire
From: Living with autoinflammatory diseases: identifying unmet needs of children, adolescents and adults
Questionnaires completed | 40/43 (93%) |
|---|---|
Male: female | 21:18 (no response in one) |
Time to diagnose from symptom onset | |
• Within one year | • 0 |
• 1–2 years | • 0 |
• 2–3 years | • 0 |
• 3–5 years | • 8 (20%) |
• 5–15 years | • 16 (40%) |
• > 15 years | • 8 (20%) |
• No response | • 8 (20%) |
Treatment with anti-IL1 therapy | 33 (83%) |
Socioeconomic data | 40 |
• Single | • 10 (25%) |
• In a relationship | • 18 (45%) |
• No answer | • 12 (30%) |
• In school | • 13 (33%) |
• At work | • 17 (43%) |
• Unemployed | • 4 (10%) |
• Retired/on disability | • 3 (8%) |
• No response | • 3 (8%) |
Identified areas of key unmet needs and information deficits | |
• Knowledge deficit of general practitioner | • 34 (85%) |
• Access to information about the applicable social security laws and social rights | • 10 (25%) |
• Access to psychosocial support | • 13 (33%) |
Impact of AID in the group of patients, who are in school or employed | 30/40 (75%) |
Average missing days at school/work | |
• Three days per month | • 19 (63%) |
• Five days per month | • 6 (20%) |
• Seven days per month | • 3 (10%) |
• > 2 weeks per month | • 1 (3%) |
• No response | • 1 (3%) |