Recommended Citation
Capelli GP, Wankowski D, Adefisoye, et al. Demographics of Primary Sclerosing Cholangitis: A Contemporary Analysis From a Community Healthcare System. Presented at Scientific Day; May 21, 2025; Park Ridge, IL.
Abstract
Background/Significance:
Primary sclerosing cholangitis (PSC) is described as a disease of adult men, with men accounting for approximately two thirds of new cases. Historically, most cases, up to 70-80% by some estimates, occur in those with concurrent inflammatory bowel disease (IBD). However, many prior studies are dated, and due to advances in imaging and diagnostic modalities, older studies may have potentially under identified cases of PSC. Recent works have also demonstrated a rising prevalence of IBD in the United States, a finding that may potentially impact demographic trends in PSC as well.
Purpose:
The purpose of this study is to describe the demographics among patients newly diagnosed with PSC between 2020 and 2024 at a large metropolitan hospital system.
Methods:
The electronic medical record system of a large community-based healthcare system in Illinois and Wisconsin was queried to identify patients diagnosed with PSC using the ICD-4 code K83.01 between January 2020 and January 2023. Manual chart review was conducted to confirm diagnoses of PSC and IBD and to collect demographic information.
Results:
A total of 327 patients were identified by EMR query to carry a diagnosis of PSC, however, after manual review, only 61 patients were confirmed to have a diagnosis of PSC and were included for analysis. The average age of the group was 51.1±17.2 years old, 54.1% were women, 77% were white, 19.7% black/African American, and 95.1% were not of Hispanic or Latino origin. In the group, 70.5% were nonsmokers. Only 47.5% carried a diagnosis of IBD. Among this group of 29 patients with concomitant PSC and IBD, 22 were diagnosed with IBD prior to PSC, 5 patients were first diagnosed with PSC, and 2 patients were diagnosed with PSC and IBD simultaneously. In the group, 11, 18, 20, and 12 diagnoses were made in 2020, 2021, 2022, and 2023 respectively.
Conclusion:
This analysis of a group of individuals diagnosed with PSC is remarkable in that the majority of the cohort (54.1%) were women, which contradicts the prevailing notion that PSC affects males more frequently, and that only 47.5% of the cohort had a concomitant diagnosis of IBD. The work is limited in the number of patients identified. Only 61 of the 327 patients identified by EMR query were found to have PSC, highlighting the weakness in relying on automated EMR data inquiry without manual chart review. These findings may indicate a need for additional large-scale examination of previously described demographic trends of PSC patients in the United States.
Presentation Notes
Presented at Scientific Day; May 21, 2025; Park Ridge, IL.
Full Text of Presentation
wf_yes
Document Type
Oral/Podium Presentation
Poster
Demographics of Primary Sclerosing Cholangitis: A Contemporary Analysis From a Community Healthcare System
Background/Significance:
Primary sclerosing cholangitis (PSC) is described as a disease of adult men, with men accounting for approximately two thirds of new cases. Historically, most cases, up to 70-80% by some estimates, occur in those with concurrent inflammatory bowel disease (IBD). However, many prior studies are dated, and due to advances in imaging and diagnostic modalities, older studies may have potentially under identified cases of PSC. Recent works have also demonstrated a rising prevalence of IBD in the United States, a finding that may potentially impact demographic trends in PSC as well.
Purpose:
The purpose of this study is to describe the demographics among patients newly diagnosed with PSC between 2020 and 2024 at a large metropolitan hospital system.
Methods:
The electronic medical record system of a large community-based healthcare system in Illinois and Wisconsin was queried to identify patients diagnosed with PSC using the ICD-4 code K83.01 between January 2020 and January 2023. Manual chart review was conducted to confirm diagnoses of PSC and IBD and to collect demographic information.
Results:
A total of 327 patients were identified by EMR query to carry a diagnosis of PSC, however, after manual review, only 61 patients were confirmed to have a diagnosis of PSC and were included for analysis. The average age of the group was 51.1±17.2 years old, 54.1% were women, 77% were white, 19.7% black/African American, and 95.1% were not of Hispanic or Latino origin. In the group, 70.5% were nonsmokers. Only 47.5% carried a diagnosis of IBD. Among this group of 29 patients with concomitant PSC and IBD, 22 were diagnosed with IBD prior to PSC, 5 patients were first diagnosed with PSC, and 2 patients were diagnosed with PSC and IBD simultaneously. In the group, 11, 18, 20, and 12 diagnoses were made in 2020, 2021, 2022, and 2023 respectively.
Conclusion:
This analysis of a group of individuals diagnosed with PSC is remarkable in that the majority of the cohort (54.1%) were women, which contradicts the prevailing notion that PSC affects males more frequently, and that only 47.5% of the cohort had a concomitant diagnosis of IBD. The work is limited in the number of patients identified. Only 61 of the 327 patients identified by EMR query were found to have PSC, highlighting the weakness in relying on automated EMR data inquiry without manual chart review. These findings may indicate a need for additional large-scale examination of previously described demographic trends of PSC patients in the United States.
Affiliations
Aurora St. Luke's Medical Center, Aurora UW Medical Group, Aurora Sinai Medical Center