 |
Free and accessible knowledge |
Journal articles
Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here?
Meena Kalluri
1
Fabrizio Luppi
2
Ada Vancheri
3
Carlo Vancheri
3
Elisabetta Balestro
4
Francesco Varone
5
Nesrin Mogulkoc
Giulia Cacopardo
6
Elena Bargagli
6
Elisabetta Renzoni
7
Sebastiano Torrisi
Mariarosaria Calvello
8
Alessandro Libra
8
Mauro Pavone
8
Francesco Bonella
7
Vincent Cottin
9
Claudia Valenzuela
10
Marlies Wijsenbeek
11
Elisabeth Bendstrup
12
Meena Kalluri 1
Author ORCID : https://orcid.org/0000-0003-4645-6292
Fabrizio Luppi 2
Author ORCID : https://orcid.org/0000-0001-5775-5947
Ada Vancheri 3
Author
Carlo Vancheri 3
Author
Elisabetta Balestro 4
Author ORCID : https://orcid.org/0000-0003-1373-8197
Francesco Varone 5
Author
Nesrin Mogulkoc
Author
Giulia Cacopardo 6
Author ORCID : https://orcid.org/0000-0002-1054-5261
Elena Bargagli 6
Author
Elisabetta Renzoni 7
Author
Sebastiano Torrisi
Author
Mariarosaria Calvello 8
Author
Alessandro Libra 8
Author
Mauro Pavone 8
Author
Francesco Bonella 7
Author ORCID : https://orcid.org/0000-0001-7579-9767
Vincent Cottin 9
Author ORCID : https://orcid.org/0000-0002-5591-0955
Claudia Valenzuela 10
Author
Marlies Wijsenbeek 11
Author
Elisabeth Bendstrup 12
Author ORCID : https://orcid.org/0000-0002-4238-6963
1
University of Alberta (116 St & 85 Ave, Edmonton, AB T6G 2R3 - Canada)
2
UNIMI - Università degli Studi di Milano [Milano] (Via Festa del Perdono 7 - 20122 Milano - Italy)
3
University of Catania [Italy] (P.zza Università, 2
I - 95124 - CATANIA - Italy)
4
AOUP - Azienda Ospedale Università di Padova = Hospital-University of Padua (Via Giustiniani, 2 - 35128 Padova - Italy)
6
UNISI - Università degli Studi di Siena = University of Siena (Rettorato - Via Banchi di Sotto 55 - 53100 Siena - Italy)
7
Royal Brompton Hospital (United Kingdom)
8
Università degli studi di Catania [Catania] (Piazza Università, 2 95131 Catania - Italy)
9
IVPC - Infections Virales et Pathologie Comparée - UMR 754 (50 Avenue Tony Garnier
69366 Lyon Cedex 07 - France)
- EPHE - École pratique des hautes études (4-14 Rue Ferrus, 75014 Paris - France)
- PSL - Université Paris sciences et lettres (60 rue Mazarine 75006 Paris - France)
- UCBL - Université Claude Bernard Lyon 1 (43, boulevard du 11 novembre 1918, 69622 Villeurbanne cedex - France)
- Université de Lyon (92 rue Pasteur - CS 30122, 69361 Lyon Cedex 07 - France)
- INRAE - Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement : UMR754 (France)
10
UAM - Universidad Autónoma de Madrid (Ciudad Universitaria de Cantoblanco · 28049 Madrid - Spain)
11
Erasmus University Rotterdam (Netherlands)
12
Aarhus University Hospital (Aarhus University Hospital
Norrebrogade 44
DK-8000 Aarhus C - Denmark)
Abstract : 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.
Document type :
Journal articles
Complete list of metadata
https://hal.inrae.fr/hal-03544352
Contributor : Sabine Rossi Connect in order to contact the contributor
Submitted on : Wednesday, January 26, 2022 - 3:38:23 PM
Last modification on : Tuesday, May 3, 2022 - 6:18:18 PM
Contributor : Sabine Rossi Connect in order to contact the contributor
Submitted on : Wednesday, January 26, 2022 - 3:38:23 PM
Last modification on : Tuesday, May 3, 2022 - 6:18:18 PM
File
2021_Kalluri_Europ_Resp_Rev.pd...
Files produced by the author(s)
Licence
Distributed under a Creative Commons Attribution - NonCommercial 4.0 International License
Identifiers
- HAL Id : hal-03544352, version 1
- DOI : 10.1183/16000617.0026-2021
- PUBMED : 34039675
- WOS : 000672820600019
Citation
Meena Kalluri, Fabrizio Luppi, Ada Vancheri, Carlo Vancheri, Elisabetta Balestro, et al.. Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here?. European Respiratory Review, European Respiratory Society, 2021, 30 (160), pp.210026. ⟨10.1183/16000617.0026-2021⟩. ⟨hal-03544352⟩
Metrics
Record views
32
Files downloads