TY - JOUR T1 - Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here? JF - European Respiratory Review JO - EUROPEAN RESPIRATORY REVIEW DO - 10.1183/16000617.0026-2021 VL - 30 IS - 160 SP - 210026 AU - Meena Kalluri AU - Fabrizio Luppi AU - Ada Vancheri AU - Carlo Vancheri AU - Elisabetta Balestro AU - Francesco Varone AU - Nesrin Mogulkoc AU - Giulia Cacopardo AU - Elena Bargagli AU - Elisabetta Renzoni AU - Sebastiano Torrisi AU - Mariarosaria Calvello AU - Alessandro Libra AU - Mauro Pavone AU - Francesco Bonella AU - Vincent Cottin AU - Claudia Valenzuela AU - Marlies Wijsenbeek AU - Elisabeth Bendstrup Y1 - 2021/06/30 UR - http://err.ersjournals.com/content/30/160/210026.abstract N2 - Patient-reported outcome measures (PROMs), tools to assess patient self-report of health status, are now increasingly used in research, care and policymaking. While there are two well-developed disease-specific PROMs for interstitial lung diseases (ILD) and idiopathic pulmonary fibrosis (IPF), many unmet and urgent needs remain. In December 2019, 64 international ILD experts convened in Erice, Italy to deliberate on many topics, including PROMs in ILD. This review summarises the history of PROMs in ILD, shortcomings of the existing tools, challenges of development, validation and implementation of their use in clinical trials, and the discussion held during the meeting. Development of disease-specific PROMs for ILD including IPF with robust methodology and validation in concordance with guidance from regulatory authorities have increased user confidence in PROMs. Minimal clinically important difference for bidirectional changes may need to be developed. Cross-cultural validation and linguistic adaptations are necessary in addition to robust psychometric properties for effective PROM use in multinational clinical trials. PROM burden of use should be reduced through appropriate use of digital technologies and computerised adaptive testing. Active patient engagement in all stages from development, testing, choosing and implementation of PROMs can help improve probability of success and further growth.PROMs are essential tools for research and care in ILD and IPF. They report patient perceptions of the impact of disease and its treatments on whole-person wellbeing and can guide research to make care more patient-centred. https://bit.ly/3s7Y0a8 ER -