RT Journal Article
SR Electronic
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
FD European Respiratory Society
SP 210026
DO 10.1183/16000617.0026-2021
VO 30
IS 160
A1 Meena Kalluri
A1 Fabrizio Luppi
A1 Ada Vancheri
A1 Carlo Vancheri
A1 Elisabetta Balestro
A1 Francesco Varone
A1 Nesrin Mogulkoc
A1 Giulia Cacopardo
A1 Elena Bargagli
A1 Elisabetta Renzoni
A1 Sebastiano Torrisi
A1 Mariarosaria Calvello
A1 Alessandro Libra
A1 Mauro Pavone
A1 Francesco Bonella
A1 Vincent Cottin
A1 Claudia Valenzuela
A1 Marlies Wijsenbeek
A1 Elisabeth Bendstrup
YR 2021
UL http://err.ersjournals.com/content/30/160/210026.abstract
AB 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