PROMs in sarcoidosis - what to use for systemic disease and individual organs and why?

This review provides a critical evaluation of patient-reported outcome measures (PROMs) in sarcoidosis, focusing on their use in assessing systemic disease and organ-specific involvement. We aim to summarize current tools, identify evidence gaps, and explore the evolving role of PROMs in both clinical research and practice.

generic instruments such as the SF-36, EQ-5D, and PROMIS have been widely applied in sarcoidosis cohorts, yet their lack of disease specificity limits their interpretability and responsiveness. Sarcoidosis-specific tools [including the Sarcoidosis Health Questionnaire (SHQ), the King's Sarcoidosis Questionnaire (KSQ), and the Fatigue Assessment Scale (FAS)] offer greater construct validity and capture symptoms more relevant to patient experience. On the other hand, PROMs for cardiac, neurologic, ocular, and hepatic involvement remain underdeveloped. PROMs are increasingly incorporated into clinical trials but are rarely used in routine care, partly due to challenges in implementation, interpretation, and integration into workflows. Technological innovations such as computer-adaptive testing and ePROMs offer promising solutions.

PROMs are essential for capturing the subjective burden of sarcoidosis, particularly in domains poorly reflected by physiologic measures. Further work is needed to expand validation across phenotypes, develop organ-specific tools, and embed PROMs into clinical decision-making and regulatory frameworks.