REED - Revista Española de Enfermedades Digestivas

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Year 2018 / Volume 110 / Number 10
Original

Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment

641-649

DOI: 10.17235/reed.2018.5665/2018

Albert Parés, Agustín Albillos, Raul Jesús Andrade, Marina Berenguer, Javier Crespo, Manuel Romero-Gómez, Mercè Vergara, Belén Vendrell, Alicia Gil,

Abstract

Introduction: primary biliary cholangitis (PBC) is a rare disease with limited data regarding its epidemiology and standard clinical management in Spain. Objective: to gain insight into the epidemiology, patient flow, diagnosis, follow-up and treatment of PBC in Spain. Methods: a review of the literature and Delphi study involving 28 specialists in two rounds of consultations and an in-person results validation workshop. Results: there are approximately 9,400 patients with PBC in Spain, with an annual incidence of 0.51-3.86 cases/100,000 population. Albeit, a high error margin may be presumed due to the scarcity of relevant studies on this subject. Several months may elapse from suspicion to a confirmed diagnosis, usually by a gastroenterologist or hepatologist. The role of the liver biopsy for diagnosis and follow-up is heterogeneous. Overall, 95% of patients are treated with ursodeoxycholic acid (UDCA) and response is primarily monitored using the Barcelona criteria. Follow-up is performed every six months, with a heterogeneous use of the various available techniques. No recommendations or second-line commercial drugs are available in the case of no response, inadequate response or intolerance to UDCA. Conclusions: while epidemiology may be estimated based on expert opinions, national registries are needed to provide accurate, up-to-date information on epidemiological parameters, disease stage and response to treatment in patients with PBC. Furthermore, novel therapies are required for selected patient groups.

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Citation tools

Parés A, Albillos A, Andrade R, Berenguer M, Crespo J, Romero-Gómez M, et all. Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment. 5665/2018

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Publication history

Received: 20/04/2018

Accepted: 08/05/2018

Online First: 23/07/2018

Published: 01/10/2018

Article revision time: 3 days

Article Online First time: 94 days

Article editing time: 164 days

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