A. Riera-Mestre , J.S. García Morillo , J. Castelbón Fernández , M.E. Hernández-Contreras , P. Aguilera Peiró , J. Jacob , F. Martínez Valle , E. Guillén-Navarro , M. Morales-Conejo
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PICO questions and DELPHI methodology for improving the management of patients with acute hepatic porphyria
Background
Acute hepatic porphyrias (AHPs) are a group of rare diseases that encompasses acute intermittent porphyria, variegate porphyria, hereditary coproporphyria, and 5-aminolaevulinic acid dehydratase deficiency porphyria. Symptoms of AHP are nonspecific which, together with its low prevalence, difficult the diagnosis and follow-up of these patients.
Material and methods
This project used DELPHI methodology to answer PICO questions related to management of patients with AHPs. The objective was to reach a consensus among multidisciplinary porhyria experts providing answers to those PICO questions for improving diagnosis and follow-up of patients with AHP.
Results
Ten PICO questions were defined and grouped in four domains: 1. Biochemical diagnosis of patients with AHP. 2. Molecular tests for patients with AHP. 3. Follow-up of patients with AHP. 4. Screening for long-term complications of patients with AHP.
Conclusions
PICO questions and DELPHI methodology have provided a consensus on relevant and controversial issues for improving the management of patients with AHP.
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