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

Liz GillSue BurrellJohn ChamberlayneStephen LombardelliJordanna MoraNicola MasonMarieke SchurerMadeline MerkelStephen MeningerJohn J Ko

Published in: Orphanet journal of rare diseases (2021)

The burden of illness with AHP is high across all patients, regardless of frequency of attacks, and AHP negatively affects patients and caregivers alike.

Keyphrases

end stage renal disease
newly diagnosed
chronic kidney disease
mental health
intensive care unit
patient reported outcomes
liver failure
drug induced
aortic dissection