Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment
primary biliary cholangitis (PBC) is a rare disease with limited data regarding its epidemiology and standard clinical management in Spain. to gain insight into the epidemiology, patient flow, diagnosis, follow-up and treatment of PBC in Spain. a review of the literature and Delphi study involving 2...
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| Published in | Revista española de enfermedades digestivas Vol. 110; no. 10; p. 641 |
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| Main Authors | , , , , , , , , |
| Format | Journal Article |
| Language | English Spanish |
| Published |
Spain
Sociedad Espanola de Patologia Digestivas
01.10.2018
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| Subjects | |
| Online Access | Get full text |
| ISSN | 1130-0108 2340-4167 |
| DOI | 10.17235/reed.2018.5665/2018 |
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| Abstract | primary biliary cholangitis (PBC) is a rare disease with limited data regarding its epidemiology and standard clinical management in Spain.
to gain insight into the epidemiology, patient flow, diagnosis, follow-up and treatment of PBC in Spain.
a review of the literature and Delphi study involving 28 specialists in two rounds of consultations and an in-person results validation workshop.
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.
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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| AbstractList | primary biliary cholangitis (PBC) is a rare disease with limited data regarding its epidemiology and standard clinical management in Spain.
to gain insight into the epidemiology, patient flow, diagnosis, follow-up and treatment of PBC in Spain.
a review of the literature and Delphi study involving 28 specialists in two rounds of consultations and an in-person results validation workshop.
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.
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. primary biliary cholangitis (PBC) is a rare disease with limited data regarding its epidemiology and standard clinical management in Spain.INTRODUCTIONprimary biliary cholangitis (PBC) is a rare disease with limited data regarding its epidemiology and standard clinical management in Spain.to gain insight into the epidemiology, patient flow, diagnosis, follow-up and treatment of PBC in Spain.OBJECTIVEto gain insight into the epidemiology, patient flow, diagnosis, follow-up and treatment of PBC in Spain.a review of the literature and Delphi study involving 28 specialists in two rounds of consultations and an in-person results validation workshop.METHODSa review of the literature and Delphi study involving 28 specialists in two rounds of consultations and an in-person results validation workshop.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.RESULTSthere 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.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.CONCLUSIONSwhile 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. 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. Key words: Primary biliary cholangitis. Epidemiology. Diagnosis. Treatment. |
| Audience | Academic |
| Author | Vergara, Merc Crespo, Javier Romero-Gómez, Manuel Andrade, Raul Jesús Vendrell, Belén Parés, Albert Berenguer, Marina Gil, Alicia Albillos, Agustín |
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| Cites_doi | 10.5009/gnl16365 10.1016/S0140-6736(96)04410-8 10.1093/qjmed/hci058 10.1002/cld.311 10.1038/ajg.2010.216 10.1080/00365520701396034 10.1186/1750-1172-3-1 10.1055/s-0034-1383726 10.1016/j.jhep.2010.02.019 10.1080/13611260500069947 10.1053/j.gastro.2005.12.029 10.1111/j.1478-3231.1999.tb00020.x 10.1093/eurheartj/ehv317 10.4254/wjh.v8.i33.1419 10.1097/MEG.0b013e328277594a 10.1111/liv.12434 10.1111/jep.12281 10.1002/hep.22906 10.1007/s11605-010-1256-1 10.1055/s-2005-858281 10.1002/hep.23210 10.1002/hep.22428 10.1056/NEJMc1611913 10.1016/j.bpg.2010.07.006 10.5582/irdr.2012.v1.2.66 10.1097/MOG.0000000000000257 10.1111/j.1478-3231.2011.02678.x 10.1016/S0016-5085(97)70183-5 10.1053/j.gastro.2012.12.005 10.1053/j.gastro.2014.10.032 10.1053/j.gastro.2004.11.009 10.1016/j.jaut.2013.06.015 10.1016/j.autrev.2014.01.041 10.1093/qjmed/hcn043 10.2147/HMER.S25998 10.1016/j.jhep.2009.04.009 |
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| Snippet | primary biliary cholangitis (PBC) is a rare disease with limited data regarding its epidemiology and standard clinical management in Spain.
to gain insight... Introduction: primary biliary cholangitis (PBC) is a rare disease with limited data regarding its epidemiology and standard clinical management in Spain.... primary biliary cholangitis (PBC) is a rare disease with limited data regarding its epidemiology and standard clinical management in Spain.INTRODUCTIONprimary... |
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| Title | Primary biliary cholangitis in Spain. Results of a Delphi study of epidemiology, diagnosis, follow-up and treatment |
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