Article

Patient and Caregiver Experiences of Living With Acute Hepatic Porphyria in the UK: A Mixed-Methods Study

2020-12-10

Abstract excerpt

<title>Abstract</title> <p>BackgroundThis study used quantitative and qualitative research methods to analyze how acute hepatic porphyria (AHP) affects patients with varying annualized porphyria attack rates (AARs). 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 acc...

Topics

Open a Topic to create a Post that cites this publication.

Identifiers and source

Literature Corpus work: 9b0b2821-3c9d-5473-b756-9ca6a4705c90
DOI: 10.21203/rs.3.rs-122666/v1

Open publication

Related research

Semantic proximity does not establish scientific evidence.

Click a neighbor to travelStep 1 · 12 closest

Patient and Caregiver Experiences of Living With Acute Hepatic Porphyria in the UK: A Mixed-Methods StudyDOI 10.21203/rs.3.rs-122666/v1Read

Acute hepatic porphyrias: Recommendations for diagnosis and management with real-world examplesSemantic proximity Read

Acute Hepatic Porphyria in Denmark; a retrospective studySemantic proximity Read

Recommendations for recognizing and diagnosing Acute Hepatic Porphyria in atypical patient populationsSemantic proximity Read

Health impact of acute intermittent porphyria in latent and non-recurrent attacks patientsSemantic proximity Read

Psychometric Properties of the Patient Reported Outcomes Measurement Information System (PROMIS) Scales in Acute Intermittent Porphyria PatientsSemantic proximity Read

[Advances in the diagnosis and treatment of porphyria-related hepatic manifestations].Semantic proximity Read

Estimating the Broader Fiscal Consequences of Acute Hepatic Porphyria (AHP) in Belgium Using a Public Economic Analytic FrameworkSemantic proximity Read

Self‐rated psychosocial consequences and quality of life in the acute porphyriasSemantic proximity Read

“Because it is a rare disease…it needs to be brought to attention that there are things out of the norm”: A qualitative study of patient and physician experiences of Wilson disease diagnosis and management in the USSemantic proximity Read

Porphyria Cutanea Tarda and Patterns of Long-term Sick Leave and Disability Pension: a 24-year Nationwide Matched Cohort StudySemantic proximity Read

A Perfect Storm: Abdominal Pain and Ileus Explained by Acute Intermittent Porphyria Caused by Prehospitalization and Intrahospitalization Factors.Semantic proximity Read

Erythropoietic Protoporphyria Life Impact and Genetic Health Trajectory (LIGHT) Study in Europe: A Cross-Sectional Online QuestionnaireSemantic proximity Read