A German Claims Database Analysis of Epidemiology, Treatment Patterns, and Healthcare Resource Utilization of Patients with Primary Biliary Cholangitis (PBC)
Author(s)
Carolin Weikl, MSc1, Isabel Karkossa, PhD2, Sophie Marquardt, MSc2, Anna Seiffert, PhD2;
1Ipsen Pharma GmbH, Munich, Germany, 2Gesundheitsforen Leipzig GmbH, Leipzig, Germany
1Ipsen Pharma GmbH, Munich, Germany, 2Gesundheitsforen Leipzig GmbH, Leipzig, Germany
Presentation Documents
OBJECTIVES: Primary biliary cholangitis (PBC) is a rare cholestatic liver disease causing fibrosis and cirrhosis. This study aims to provide an overview of the epidemiology, the current treatment landscape, and healthcare resource utilization (HCRU) in Germany.
METHODS: The retrospective cohort study utilized German claims data from a representative sample of 2.4 million adult, fully insured individuals of the Statutory Health Insurance (SHI) database 'German Analysis Database' (DADB). Patients diagnosed with PBC between 2017 and 2022 have been assessed for prevalence and incidence as well as treatment, comorbidities, HCRU, and HCRU-related costs.
RESULTS: Results showed an average annual prevalence of 5/10,000 (DADB: 1,192; SHI [extrapolated]: 32,792) and an incidence of 1/10,000 (DADB: 213; SHI: 5,943) of PBC in Germany. The index diagnosis was mainly given by internists, gastroenterologists, or general practitioners in the outpatient setting, among haematologists and oncologists responsible for treatment. On average, 79.4% of prevalent patients with PBC were treated with UDCA, up to 4.3% received OCA or fibrates, and 20.4% of diagnosed patients received none of these treatments. After initial diagnosis, treatment typically started after 22 days with UDCA. Assessing the following three years, 33.1% discontinued treatment after first line of treatment without any further therapy initiations. Patients stayed on UDCA for 325 days and on fibrates for 184 days (median). Common comorbidities included vascular and pulmonary diseases (60.4%) and endocrine/metabolic diseases (58.7%). Management of PBC mainly occurred in the outpatient setting with an average of 16 visits per patient per year. Median annual costs per patient were approximately €3,344 and €216,390 with liver transplantation.
CONCLUSIONS: This study reveals detailed insights into the clinical reality of patients with PBC in Germany, including the current treatment landscape, underscoring the high and urgent unmet need for improved care strategies due to high rates of treatment discontinuation and missing treatment initiation.
METHODS: The retrospective cohort study utilized German claims data from a representative sample of 2.4 million adult, fully insured individuals of the Statutory Health Insurance (SHI) database 'German Analysis Database' (DADB). Patients diagnosed with PBC between 2017 and 2022 have been assessed for prevalence and incidence as well as treatment, comorbidities, HCRU, and HCRU-related costs.
RESULTS: Results showed an average annual prevalence of 5/10,000 (DADB: 1,192; SHI [extrapolated]: 32,792) and an incidence of 1/10,000 (DADB: 213; SHI: 5,943) of PBC in Germany. The index diagnosis was mainly given by internists, gastroenterologists, or general practitioners in the outpatient setting, among haematologists and oncologists responsible for treatment. On average, 79.4% of prevalent patients with PBC were treated with UDCA, up to 4.3% received OCA or fibrates, and 20.4% of diagnosed patients received none of these treatments. After initial diagnosis, treatment typically started after 22 days with UDCA. Assessing the following three years, 33.1% discontinued treatment after first line of treatment without any further therapy initiations. Patients stayed on UDCA for 325 days and on fibrates for 184 days (median). Common comorbidities included vascular and pulmonary diseases (60.4%) and endocrine/metabolic diseases (58.7%). Management of PBC mainly occurred in the outpatient setting with an average of 16 visits per patient per year. Median annual costs per patient were approximately €3,344 and €216,390 with liver transplantation.
CONCLUSIONS: This study reveals detailed insights into the clinical reality of patients with PBC in Germany, including the current treatment landscape, underscoring the high and urgent unmet need for improved care strategies due to high rates of treatment discontinuation and missing treatment initiation.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
EPH161
Topic
Epidemiology & Public Health
Disease
SDC: Rare & Orphan Diseases