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

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 nat...

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Bibliographic Details
Main Authors: Liz Gill, Sue Burrell, John Chamberlayne, Stephen Lombardelli, Jordanna Mora, Nicola Mason, Marieke Schurer, Madeline Merkel, Stephen Meninger, John J. Ko
Format: Article
Language:English
Published: BMC 2021-04-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Porphyria
Acute hepatic porphyria
Qualitative
Quantitative
Quality of life
Caregiver experience
Online Access:https://doi.org/10.1186/s13023-021-01816-2

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