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

ABSTRACT:

Background

This study used quantitative and qualitative research methods to analyze how acute hepatic porphyria (AHP) affects patients with varying annualized porphyria attack rates. The overall impact of AHP on patients and caregivers, including their quality of life, was explored. The nature and treatment of acute attacks, experiences of long-term heme arginate treatment and access to other appropriate treatment, and the extent of and treatment for chronic symptoms were also investigated within this study.

Methods

Patient and caregiver data were collected via an online survey of members of the British Porphyria Association, followed by an optional 1-h telephone interview.

Results

Thirty-eight patients and 10 caregivers responded to the survey. Of those, 10 patients

SUBMITTER: Gill L 

PROVIDER: S-EPMC8074407 | biostudies-literature | 2021 Apr

REPOSITORIES: biostudies-literature