Health outcomes in IPF and PPF: European survey on healthcare professionals’ views and practices
<bold>Background:</bold> Idiopathic pulmonary fibrosis (IPF) and progressive pulmonary fibrosis (PPF) of interstitial lung diseases (ILD) carry a high burden and mortality. We aimed to gather information on important person-centered outcomes in routine clinical care across Europe according to healthcare professionals (HCPs). This work is part of the COCOS-IPF project on developing a Core Outcome Set for and with patients with IPF, PPF. <bold>Methods:</bold> We developed an online survey for European interdisciplinary HCPs with ILD expertise. The survey was programmed in QualtricsXM, piloted and distributed via networks of the COCOS-IPF consortium consisting of clinicians, patient representatives, social experts. We used content analysis to create an overall list of outcomes, classified according to COMET (Core Outcome Measures in Effectiveness Trials) taxonomy and calculated frequency of all outcomes mentioned by participants. <bold>Results:</bold> 149 experts, mainly pulmonologists working in ILD expert centers from 31 different European countries participated. From 43 different outcome domains, respiratory, general outcomes and quality of life were prioritized. Participants reported lung function and exercise capacity as most frequent clinical outcome domains (fig.). <fig><object-id>erj;64/suppl_68/OA2865/F1</object-id><object-id>F1</object-id><object-id>F1</object-id><graphic></graphic></fig> <bold>Conclusions:</bold> Lung function, exercise capacity, quality of life were rated as most relevant health outcomes by experts in a European survey aiming to improve patients´ routine care and life.
Authors
- Michael Kreuter (ORCID: https://orcid.org/0000-0003-4402-2159)
- Thomy Tonia (ORCID: https://orcid.org/0000-0001-7896-6188)
- Fabienne Dobbels (ORCID: https://orcid.org/0000-0002-9502-7374)
- Liam Galvin (ORCID: https://orcid.org/0000-0003-0004-7776)
- Jeanette Boyd (ORCID: https://orcid.org/0009-0009-8636-8829)
- Steve Jones (ORCID: https://orcid.org/0000-0001-6639-4872)
- Liesbet Van Bulck (ORCID: https://orcid.org/0000-0001-8975-4455)
- Vivien Somogyi
- Nesrin Moğulkoç (ORCID: https://orcid.org/0000-0003-1870-5669)
- Ömer Selim Unat (ORCID: https://orcid.org/0000-0002-5708-2233)
- Anouk Delameillieure (ORCID: https://orcid.org/0000-0003-1612-0317)
- Polina Starchenko
- Wim Wuyts (ORCID: https://orcid.org/0000-0001-9648-3497)
- Pippa Powell (ORCID: https://orcid.org/0000-0003-1828-8332)
- Zehra Nur Töreyin (ORCID: https://orcid.org/0000-0001-9535-5207)
- Natalia Liagka
- Nazlı Üçkuyu
- Eda Sen
- Silja Schenk
- Nikola Stenzel
Institutions
- Johannes Gutenberg University Mainz (DE)
- British Lung Foundation (GB)
- Ege University (TR)
- University Medical Center of the Johannes Gutenberg University Mainz (DE)
- MSD (Belgium) (BE)
- Psychologische Hochschule Berlin (DE)
- Institute of Social and Preventive Medicine (CH)
- Department of Public Health (MM)
- European Federation of Nurses Associations (BE)
- KU Leuven (BE)
Publication Details
- Published
- 2024-09-14
- DOI
- https://doi.org/10.1183/13993003.congress-2024.oa2865
- Primary Topic
- Health Systems, Economic Evaluations, Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 0.00