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Cases of liver disease lost in the health system: a call to action

Antonio Olveira1, Manuel Hernández-Guerra2, Esther Molina3

  • 1Aparato Digestivo, Hospital La Paz, España.

Revista Espanola De Enfermedades Digestivas
|September 30, 2021
PubMed

Insights

Many primary biliary cholangitis (PBC) patients are lost in healthcare systems, delaying diagnosis and treatment. A review found insufficient data for diagnosis in most cases, missing crucial early intervention opportunities.

Area of Science:

  • Hepatology
  • Gastroenterology
  • Clinical Research

Background:

  • Primary biliary cholangitis (PBC) is a chronic liver disease requiring early diagnosis and treatment.
  • Patients lost within healthcare systems pose a challenge for timely medical intervention.
  • Previous studies highlight the difficulties in identifying and managing PBC patients effectively.

Purpose of the Study:

  • To assess the feasibility of identifying patients with primary biliary cholangitis (PBC) lost in the healthcare system.
  • To evaluate the availability of diagnostic data for PBC in a multi-hospital setting.
  • To determine the proportion of diagnosed PBC cases and identify prognostic indicators in rescued patients.

Main Methods:

  • A retrospective search of electronic health records across four hospitals, including three tertiary care centers.
  • Analysis of available clinical data to confirm PBC diagnosis based on cholestasis, antimitochondrial antibody (AMA) titers, and exclusion of other liver diseases.
  • Review of elastography results for a subset of identified patients.

Main Results:

  • Sufficient diagnostic data for PBC was found in only 14.3% (100/697) of reviewed cases.
  • A significant number of patients remained undiagnosed, missing opportunities for early treatment.
  • Among 30 rescued patients, 27% showed elastography results (> 9.5 kPa) indicative of a poorer prognosis.

Conclusions:

  • Healthcare system data is often insufficient for diagnosing primary biliary cholangitis, leading to delayed care.
  • A substantial proportion of patients identified through data searches had advanced disease indicators.
  • Improved systematic searches and data accessibility are crucial for timely PBC diagnosis and management.

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