TABLE 1.

Patient demographics and health characteristics

Characteristic	Total sample (N = 92)
Age, mean (SD), years	41.1 (12.4)
Female, n (%)	83 (90.2)
Diagnosis, n (%)
Acute intermittent porphyria	68 (73.9)
Hereditary coproporphyria	12 (13.0)
Variegate porphyria	9 (9.8)
5′‐Aminolevulinic acid dehydratase deficiency porphyria	1 (1.1)
Age at diagnosis, mean (SD), years	30.8 (10.8)
Age at first symptoms, mean (SD), years	24.3 (10.7)
Time to diagnosis, mean (SD), years	6.4 (10.1)
Duration of disease, mean (SD), years	16.9 (13.0)
AHP attacks within past 2 years, median (IQR)	4.5 (2, 12)
AHP attacks leading to hospitalization, median (IQR)	2.0 (0, 3)
AHP treatment, n (%)
Trigger avoidance	59 (64.1)
On‐demand IV glucose, as needed for an attack	52 (56.5)
On‐demand hemin, as needed for an attack	36 (39.1)
Routine/scheduled hemin	22 (23.9)
Routine/scheduled IV glucose	18 (19.6)
Holistic therapies	16 (17.4)
Gonadotropin‐releasing hormone agonist	2 (2.2)

Abbreviations: AHP, acute hepatic porphyria; IQR, interquartile range; IV, intravenous; SD, standard deviation.