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Table 1 Demographics and characteristics from the online survey

From: Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

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
  1. Note: Data within the caregiver column are relevant to the patients with AHP for whom they are caring
  2. aDue to the small patient population, the survey did not ask patients or caregivers to provide their current age for anonymity purposes