Marco Carbone, Laura Cristoferi, Paolo Angelo Cortesi, Matteo Rota, Antonio Ciaccio, Stefano Okolicsanyi, Marta Gemma, Luciana Scalone, Giancarlo Cesana, Luca Fabris, Michele Colledan, Stefano Fagiuoli, Gaetano Ideo, Luca Saverio Belli, Luca Maria Munari, Lorenzo Giovanni Mantovani, Mario Strazzabosco
August 2017
BBA Molecular Basis of Diseas
http://www.sciencedirect.com/science/article/pii/S0925443917303071

Abstract
Background
Autoimmune hepatitis, primary biliary cholangitis, and primary sclerosing cholangitis represent the three major autoimmune liver diseases (AILDs). Their management is highly specialized, requires a multidisciplinary approach and often relies on expensive, orphan drugs. Unfortunately, their treatment is often unsatisfactory, and the care pathway heterogeneous across different centers. Disease-specific clinical outcome indicators (COIs) able to evaluate the whole cycle of care are needed to assist both clinicians and administrators in improving quality and value of care. Aim of our study was to generate a set of COIs for the three AILDs. We then prospectively validated these indicators based on a series of consecutive patients recruited at three tertiary clinical centers in Lombardy, Italy.

Methods
In phase I using a Delphi method and a RAND 9-point appropriateness scale a set of COIs was generated. In phase II the indicators were applied in a real-life dataset.

Results
Two-hundred fourteen patients were enrolled and followed-up for a median time of 54 months and the above COIs were recorded using a web-based electronic medical record program. The COIs were easy to collect in the clinical practice environment and their values compared well with the available natural history studies.

Conclusions
We have generated a comprehensive set of COIs which sequentially capture different clinical outcome of the three AILDs explored. These indicators represent a critical tool to implement a value-based approach to patients with these conditions, to monitor, compare and improve quality through benchmarking of clinical performance and to assess the significance of novel drugs and technologies. This article is part of a Special Issue entitled: Cholangiocytes in Health and Diseaseedited by Jesus Banales, Marco Marzioni, Nicholas LaRusso and Peter Jansen.

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