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

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 f low, diagnosis, follow-up and treatment of PBC in Spain. Methods: a review of the lite...

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Authors: Parés, Albert, Albillos, Agustín, Andrade, Raúl Jesús, Berenguer, Marina, Crespo, Javier, Romero Gómez, Manuel, Vergara, Mercè, Vendrell, Belén, Gil, Alicia
Format: article
Status:Published version
Publication Date:2018
Country:España
Institution:Universidad de Sevilla (US)
Repository:idUS. Depósito de Investigación de la Universidad de Sevilla
OAI Identifier:oai:idus.us.es:11441/158458
Online Access:https://hdl.handle.net/11441/158458
https://doi.org/10.17235/reed.2018.5665/2018
Access Level:Open access
Keyword:Primary biliary cholangitis
Epidemiology
Diagnosis
Treatment
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spelling Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatmentParés, AlbertAlbillos, AgustínAndrade, Raúl JesúsBerenguer, MarinaCrespo, JavierRomero Gómez, ManuelVergara, MercèVendrell, BelénGil, AliciaPrimary biliary cholangitisEpidemiologyDiagnosisTreatmentIntroduction: 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 f low, diagnosis, follow-up and treatment of PBC in Spain. Methods: a review of the literature and Delphi study involv ing 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. Sev eral 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 per formed 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 pro vide accurate, up-to-date information on epidemiologi cal parameters, disease stage and response to treatment in patients with PBC. Furthermore, novel therapies are required for selected patient groups.Aran Ediciones S.A.MedicinaCTS532: Unidad de Hepatología (Sistema Sanitario Público de Andalucía. Fundación Pública Andaluza para la Gestión de la Investigación en Salud de Sevilla)2018info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttps://hdl.handle.net/11441/158458https://doi.org/10.17235/reed.2018.5665/2018reponame:idUS. Depósito de Investigación de la Universidad de Sevillainstname:Universidad de Sevilla (US)InglésRevista Española de Enfermedades Digestivas, 110 (10), 641-649.https://www.reed.es/ArticuloFicha.aspx?id=3370&hst=0&idR=65&tp=1info:eu-repo/semantics/openAccessoai:idus.us.es:11441/1584582026-06-17T12:51:07Z
dc.title.none.fl_str_mv Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment
title Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment
spellingShingle Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment
Parés, Albert
Primary biliary cholangitis
Epidemiology
Diagnosis
Treatment
title_short Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment
title_full Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment
title_fullStr Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment
title_full_unstemmed Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment
title_sort Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment
dc.creator.none.fl_str_mv Parés, Albert
Albillos, Agustín
Andrade, Raúl Jesús
Berenguer, Marina
Crespo, Javier
Romero Gómez, Manuel
Vergara, Mercè
Vendrell, Belén
Gil, Alicia
author Parés, Albert
author_facet Parés, Albert
Albillos, Agustín
Andrade, Raúl Jesús
Berenguer, Marina
Crespo, Javier
Romero Gómez, Manuel
Vergara, Mercè
Vendrell, Belén
Gil, Alicia
author_role author
author2 Albillos, Agustín
Andrade, Raúl Jesús
Berenguer, Marina
Crespo, Javier
Romero Gómez, Manuel
Vergara, Mercè
Vendrell, Belén
Gil, Alicia
author2_role author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Medicina
CTS532: Unidad de Hepatología (Sistema Sanitario Público de Andalucía. Fundación Pública Andaluza para la Gestión de la Investigación en Salud de Sevilla)
dc.subject.none.fl_str_mv Primary biliary cholangitis
Epidemiology
Diagnosis
Treatment
topic Primary biliary cholangitis
Epidemiology
Diagnosis
Treatment
description 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 f low, diagnosis, follow-up and treatment of PBC in Spain. Methods: a review of the literature and Delphi study involv ing 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. Sev eral 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 per formed 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 pro vide accurate, up-to-date information on epidemiologi cal parameters, disease stage and response to treatment in patients with PBC. Furthermore, novel therapies are required for selected patient groups.
publishDate 2018
dc.date.none.fl_str_mv 2018
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://hdl.handle.net/11441/158458
https://doi.org/10.17235/reed.2018.5665/2018
url https://hdl.handle.net/11441/158458
https://doi.org/10.17235/reed.2018.5665/2018
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Revista Española de Enfermedades Digestivas, 110 (10), 641-649.
https://www.reed.es/ArticuloFicha.aspx?id=3370&hst=0&idR=65&tp=1
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Aran Ediciones S.A.
publisher.none.fl_str_mv Aran Ediciones S.A.
dc.source.none.fl_str_mv reponame:idUS. Depósito de Investigación de la Universidad de Sevilla
instname:Universidad de Sevilla (US)
instname_str Universidad de Sevilla (US)
reponame_str idUS. Depósito de Investigación de la Universidad de Sevilla
collection idUS. Depósito de Investigación de la Universidad de Sevilla
repository.name.fl_str_mv
repository.mail.fl_str_mv
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