Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review
Introduction People with idiopathic pulmonary fibrosis (IPF) and other forms of progressive pulmonary fibrosis (PPF) have a high symptom burden and a poor health-related quality of life (HRQoL). Despite efforts to offer specialised treatment, clinical care for these patients remains suboptimal and s...
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| Format: | Article |
| Language: | English |
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European Respiratory Society
2025-01-01
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| Series: | European Respiratory Review |
| Online Access: | http://err.ersjournals.com/content/34/175/240133.full |
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| author | Anouk Delameillieure Vivien Somogyi Silja Schenk Nur Toreyin Nikola Stenzel Liesbet Van Bulck Sofie Breuls Michael Kreuter Wim A. Wuyts Nesrin Mogulkoc Jeanette Boyd Steve Jones Liam Galvin Fabienne Dobbels |
| author_facet | Anouk Delameillieure Vivien Somogyi Silja Schenk Nur Toreyin Nikola Stenzel Liesbet Van Bulck Sofie Breuls Michael Kreuter Wim A. Wuyts Nesrin Mogulkoc Jeanette Boyd Steve Jones Liam Galvin Fabienne Dobbels |
| author_sort | Anouk Delameillieure |
| collection | DOAJ |
| description | Introduction
People with idiopathic pulmonary fibrosis (IPF) and other forms of progressive pulmonary fibrosis (PPF) have a high symptom burden and a poor health-related quality of life (HRQoL). Despite efforts to offer specialised treatment, clinical care for these patients remains suboptimal and several nonmedical needs remain unaddressed. Developing a core outcome set (COS) can help to identify a minimum set of agreed-upon outcomes that should be measured and acted-upon in clinical care.
Aim
As a first step towards developing a COS for IPF/PPF, we aimed to identify outcome domains investigated in IPF/PPF research.
Methods
Conducted within the COCOS-IPF (Co-designing a Core Outcome Set for and with patients with IPF) project, this scoping review follows Joanna Briggs Institute methodology and PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) guidelines to search PubMed, Embase and Web of Science for quantitative, qualitative and mixed-methods papers. We extracted each paper's outcomes verbatim and classified them using the COMET (Core Outcome Measures in Effectiveness Trials) taxonomy. Then, the research team structured outcomes or concepts with similar meanings inductively into outcome domains.
Results
We included 428 papers, extracting 1685 outcomes. Most outcomes (n=1340) were identified in quantitative sources, which we could classify in 64 outcome domains, with the main domains being “all-cause survival” (n=237), “lung function” (n=164) and “exercise capacity” (n=99). Qualitative sources identified 51 outcome domains, with the most frequent being “capability to do activities you enjoy” (n=31), “anxiety, worry and fear” (n=26) and “dealing with disease progression” (n=25).
Conclusions
The identified outcomes, spanning diverse domains, highlight the complexity of patient experiences and can form the basis to develop a COS for IPF/PPF clinical care, as well as future research. |
| format | Article |
| id | doaj-art-3fc4031f82d9441a8f9f00cae5459376 |
| institution | Kabale University |
| issn | 0905-9180 1600-0617 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | European Respiratory Society |
| record_format | Article |
| series | European Respiratory Review |
| spelling | doaj-art-3fc4031f82d9441a8f9f00cae54593762025-08-20T03:40:57ZengEuropean Respiratory SocietyEuropean Respiratory Review0905-91801600-06172025-01-013417510.1183/16000617.0133-20240133-2024Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping reviewAnouk Delameillieure0Vivien Somogyi1Silja Schenk2Nur Toreyin3Nikola Stenzel4Liesbet Van Bulck5Sofie Breuls6Michael Kreuter7Wim A. Wuyts8Nesrin Mogulkoc9Jeanette Boyd10Steve Jones11Liam Galvin12Fabienne Dobbels13 Dept of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven – University of Leuven, Leuven, Belgium Mainz Center for Pulmonary Medicine, Departments of Pneumology, Mainz University Medical Center, Mainz, Germany Dept of Psychology, Psychologische Hochschule Berlin (PHB), Berlin, Germany Dept of Pulmonary Medicine, Ege University Medical School, Ege University Hospital, Izmir, Turkiye Dept of Psychology, Psychologische Hochschule Berlin (PHB), Berlin, Germany Dept of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven – University of Leuven, Leuven, Belgium Dept of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven – University of Leuven, Leuven, Belgium Mainz Center for Pulmonary Medicine, Departments of Pneumology, Mainz University Medical Center, Mainz, Germany Unit for Interstitial Lung Disease, Dept of Respiratory Diseases, University Hospitals Leuven, Leuven, Belgium Dept of Pulmonary Medicine, Ege University Medical School, Ege University Hospital, Izmir, Turkiye European Lung Foundation (ELF), Sheffield, UK European Pulmonary Fibrosis Federation (EU-PFF), Overijse, Belgium European Pulmonary Fibrosis Federation (EU-PFF), Overijse, Belgium Dept of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven – University of Leuven, Leuven, Belgium Introduction People with idiopathic pulmonary fibrosis (IPF) and other forms of progressive pulmonary fibrosis (PPF) have a high symptom burden and a poor health-related quality of life (HRQoL). Despite efforts to offer specialised treatment, clinical care for these patients remains suboptimal and several nonmedical needs remain unaddressed. Developing a core outcome set (COS) can help to identify a minimum set of agreed-upon outcomes that should be measured and acted-upon in clinical care. Aim As a first step towards developing a COS for IPF/PPF, we aimed to identify outcome domains investigated in IPF/PPF research. Methods Conducted within the COCOS-IPF (Co-designing a Core Outcome Set for and with patients with IPF) project, this scoping review follows Joanna Briggs Institute methodology and PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) guidelines to search PubMed, Embase and Web of Science for quantitative, qualitative and mixed-methods papers. We extracted each paper's outcomes verbatim and classified them using the COMET (Core Outcome Measures in Effectiveness Trials) taxonomy. Then, the research team structured outcomes or concepts with similar meanings inductively into outcome domains. Results We included 428 papers, extracting 1685 outcomes. Most outcomes (n=1340) were identified in quantitative sources, which we could classify in 64 outcome domains, with the main domains being “all-cause survival” (n=237), “lung function” (n=164) and “exercise capacity” (n=99). Qualitative sources identified 51 outcome domains, with the most frequent being “capability to do activities you enjoy” (n=31), “anxiety, worry and fear” (n=26) and “dealing with disease progression” (n=25). Conclusions The identified outcomes, spanning diverse domains, highlight the complexity of patient experiences and can form the basis to develop a COS for IPF/PPF clinical care, as well as future research.http://err.ersjournals.com/content/34/175/240133.full |
| spellingShingle | Anouk Delameillieure Vivien Somogyi Silja Schenk Nur Toreyin Nikola Stenzel Liesbet Van Bulck Sofie Breuls Michael Kreuter Wim A. Wuyts Nesrin Mogulkoc Jeanette Boyd Steve Jones Liam Galvin Fabienne Dobbels Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review European Respiratory Review |
| title | Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review |
| title_full | Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review |
| title_fullStr | Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review |
| title_full_unstemmed | Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review |
| title_short | Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review |
| title_sort | identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis a scoping review |
| url | http://err.ersjournals.com/content/34/175/240133.full |
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