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Table 2 Demographics and characteristics from the telephone interviews

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

Participant characteristics Patient (n = 10) Caregiver (n = 3)
Sex, n (%)
 Male 1 (10) 3 (100)
 Female 9 (90) 0
Mean age, years (range) 37.3 (24–57) 40.3 (30–55)
Work status, n (%)
 Unemployed 3 (30) N/A
 Voluntary work 1 (10) N/A
 Student 1 (10) N/A
 Employed 5 (50) N/A
Marital status, n (%)
 Single 3 (30) N/A
 Partnership 1 (10) N/A
 Married 6 (60) N/A
Type of porphyria, n (%)
 AIP 9 (90) 3 (100)
 VP 1 (10) 0
 HCP 0 0
Mean age when experiencing first symptoms, years (range) 22.3 (14–33) N/A
Mean age when diagnosed, years (range) 23.8 (13–33) N/A
Relationship to patient, n (%)
 Parent N/A 0
 Partner/spouse N/A 3 (100)
 Close friend N/A 0
Number of attacks in the last 2 years, n (%)a
 1–3 5 (50) 1 (33)
 4–6 2 (20) 1 (33)
 7–9 0 0
 ≥ 10 2 (20) 0
 Unclear 1 (10)b 1 (33)
Recurrence of attacks within the previous 12 months, n (%)
 AAR < 3 4 (40) 2 (66)
 AAR ≥ 3 6 (60) 1 (33)
Regular prophylactic treatment, n (%)
 No 5 (50) 2 (66)
 Yes, heme arginate 4 (40) 1 (33)
 Yes, GnRH agonist 1 (10) 0
  1. Note: Data within the caregiver column are relevant to the patients with AHP for whom they were caring
  2. aCaregiver-reported data were used where possible to complete the caregiver column; in one case this deviated from the patient-reported data. Whenever someone provided a range of attacks over a certain period, the average was used (e.g. ‘around once every four months’ was interpreted as three times a year)
  3. bPatient E (≥ 3 attacks per year) experienced six to 10 ‘bad ones’ per year since being diagnosed but had a good year in 2016–2017. Therefore, it is unclear how many attacks were experienced in the last 2 years