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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