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Table 12 Patient eligibility criteria for the survey and interview phases

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

Online survey inclusion/exclusion criteria
 Patients and caregivers were required to be ≥ 18 years old with a confirmed diagnosis (or caring for a patient with a confirmed diagnosis) of AHP, including AIP, VP, HCP and ADP
 For the purposes of this study a diagnosis of AHP included participant-reported confirmation of elevated ALA testing, elevated PBG testing or positive genetic testing
 Participants who did not fulfil these criteria were excluded
Interview inclusion criteria
 Patients currently treated with prophylactic heme arginate or hormone suppression therapy, or who had experienced at least one acute attack in the past two years that required hospitalization, an urgent healthcare visit or treatment with intravenous heme arginate at home
 Patients and caregivers were required to give their informed consent for both the survey and the interviews and were considered to have the cognitive ability to adequately understand and answer questions during the interview, in the opinion of the researchers conducting the interview
Interview exclusion criteria
 Patients were not interviewed if they were participating in a clinical trial investigating a medicinal product for AHP, or if they had received a liver transplant to treat AHP