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

Table 2 Demographics and characteristics from the telephone interviews

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

Note: Data within the caregiver column are relevant to the patients with AHP for whom they were caring
^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)
^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

ISSN: 1750-1172