Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: Where to go from here?

Meena Kalluri*, Fabrizio Luppi, Ada Vancheri, Carlo Vancheri, Elisabetta Balestro, Francesco Varone, Nesrin Mogulkoc, Giulia Cacopardo, Elena Bargagli, Elisabetta Renzoni, Sebastiano Torrisi, Mariarosaria Calvello, Alessandro Libra, Mauro Pavone, Francesco Bonella, Vincent Cottin, Claudia Valenzuela, Marlies Wijsenbeek, Elisabeth Bendstrup

*Corresponding author for this work

Research output: Contribution to journalReview articleAcademicpeer-review

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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.

Original languageEnglish
Article number210026
JournalEuropean Respiratory Review
Issue number160
Publication statusPublished - 30 Jun 2021

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© The authors 2021.


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