Levy Cynthia, Buchanan-Peart Keri-Ann, MacEwan Joanna P, Levine Alina, Nair Radhika, Wheeler Darren, Bessonova Leona, Goel Aparna, Gish Robert G, Bonder Alan
Schiff Center for Liver Diseases, University of Miami, Miami, Florida, USA.
Division of Digestive Health and Liver Diseases, University of Miami, Miami, Florida, USA.
Hepatol Commun. 2025 Apr 14;9(5). doi: 10.1097/HC9.0000000000000677. eCollection 2025 May 1.
Prevalence estimates of primary biliary cholangitis (PBC) in the United States have evolved with the introduction of newer real-world data capture approaches. Little is known about the geographic distribution of PBC in the United States and the health care provider (HCP) landscape for patients with PBC. This real-world study aimed to estimate the prevalence of PBC in the United States, assess regional variability in its prevalence, and describe HCPs for patients with PBC.
Patients with PBC were identified using Komodo's Healthcare Map, a large national administrative claims database. PBC prevalence per 100,000 adults was adjusted by age and gender at the 3-digit ZIP Code tabulation area level. Patients' PBC-related medical or pharmacy claims were used to determine HCP specialties and affiliations (academic vs. nonacademic); the latest claim and all claims were examined.
The adjusted 2021 PBC prevalence was 40.9 per 100,000 adults. The highest absolute number of patients with PBC in the United States was in heavily populated urban areas, but prevalence adjusted for population size was highest in some rural areas. Among all claims, most (83.2%) patients received care from a specialist (gastroenterologist/hepatologist) at one time. However, only approximately half (53.5%) of patients with PBC, irrespective of therapy use, were most recently treated for PBC by a specialist.
This is the most comprehensive and contemporary estimation of PBC prevalence in the United States to date. The pockets of high prevalence of PBC located in some rural areas highlight the need to better evaluate PBC risk factors and potential barriers in access to specialist care once patients are diagnosed. Greater awareness of PBC and its management are needed.
随着更新的真实世界数据采集方法的引入，美国原发性胆汁性胆管炎（PBC）的患病率估计值有所变化。关于美国PBC的地理分布以及PBC患者的医疗服务提供者（HCP）情况知之甚少。这项真实世界研究旨在估计美国PBC的患病率，评估其患病率的区域差异，并描述PBC患者的HCP情况。
使用科莫多医疗地图（一个大型的全国性行政索赔数据库）识别PBC患者。在3位邮政编码分区级别，按年龄和性别对每10万名成年人中的PBC患病率进行调整。患者与PBC相关的医疗或药房索赔用于确定HCP的专业和所属机构（学术机构与非学术机构）；检查了最新索赔和所有索赔。
2021年调整后的PBC患病率为每10万名成年人中有40.9例。美国PBC患者绝对数量最多的地区是人口密集的城市地区，但按人口规模调整后的患病率在一些农村地区最高。在所有索赔中，大多数（83.2%）患者曾一度接受专科医生（胃肠病学家/肝病学家）的治疗。然而，无论是否使用治疗方法，只有大约一半（53.5%）的PBC患者最近是由专科医生治疗PBC的。
这是迄今为止对美国PBC患病率最全面和最新的估计。一些农村地区PBC患病率较高的情况凸显了一旦患者被诊断，需要更好地评估PBC的风险因素以及获得专科护理的潜在障碍。需要提高对PBC及其管理的认识。
