Participant characteristics | Patient (n = 38) | Caregiver (n = 10) |
---|---|---|
Sex, n (%) | ||
Male | 2 (5) | 3 (30) |
Female | 36 (95) | 7 (70) |
Type of porphyria | ||
AIP | 28 (74) | 9 (90) |
VP | 9 (23) | 1 (10) |
HCP | 1 (3) | 0 (0) |
Mean age when experiencing first symptoms, years (range)a | 22.4 (10–45) | N/A |
Mean age when diagnosed, years (range) | 23.7 (1–48) | N/A |
Mean years of caring for patient, years (range) | N/A | 13.3 (4–24) |
Relationship to patient, n (%) | ||
Parent | N/A | 6 (60) |
Partner/spouse | N/A | 3 (30) |
Close friend | N/A | 1 (10) |
Frequency of attacks within the previous 12 months, n (%) | ||
AAR 0 or unsure | 24 (63) | N/A |
AAR < 3 | 9 (24) | N/A |
AAR ≥ 3 | 5 (13) | N/A |