Evidence map›Paper›PMID 40022111›Full record

ArticleRespiratory research2025

Person-centred health outcomes in the routine care for people with progressive pulmonary fibrosis: the COCOS-IPF project's European survey on healthcare professionals' views and practices.

Vivien Somogyi, Anouk Delameillieure, Silja Schenk, Liesbet Van Bulck, Sofie Breuls, Nazli Üçkuyu, Zehra Nur Töreyin, Nikola Stenzel, Nesrin Moğulkoç, Wim Wuyts and 6 more

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Article in Respiratory research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors.

Vivien SomogyiMainz Center for Pulmonary Medicine, Dept of Pneumology, Critical Care & Sleep Medicine, Mainz University Medical Center and of Pulmonary, Marienhaus Clinic Mainz, Mainz, Germany.
Anouk DelameillieureDept of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Kapucijnenvoer 7, Box 7001, Leuven, B-3000, Belgium.
Silja SchenkDept of Psychology and Psychotherapy, Psychologische Hochschule Berlin (PHB), Berlin, Germany.
Liesbet Van BulckDept of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Kapucijnenvoer 7, Box 7001, Leuven, B-3000, Belgium.
Sofie BreulsDept of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Kapucijnenvoer 7, Box 7001, Leuven, B-3000, Belgium.
Nazli ÜçkuyuDept of Pulmonary Medicine, Ege University Medical School, Ege University Hospital, Izmir, Turkey.
Zehra Nur TöreyinDept of Pulmonary Medicine, Ege University Medical School, Ege University Hospital, Izmir, Turkey.
Nikola StenzelDept of Psychology and Psychotherapy, Psychologische Hochschule Berlin (PHB), Berlin, Germany.
Nesrin MoğulkoçDept of Pulmonary Medicine, Ege University Medical School, Ege University Hospital, Izmir, Turkey.
Wim WuytsDept of Chronic Diseases and Metabolism, Laboratory of Respiratory Diseases and Thoracic Surgery, Dept of Respiratory Diseases, Unit for Interstitial Lung Diseases, KU Leuven, University Hospitals Leuven, Leuven, Belgium.
Steve JonesEuropean Pulmonary Fibrosis Federation (EU-PFF), Brussels, Belgium.
Liam GalvinEuropean Pulmonary Fibrosis Federation (EU-PFF), Brussels, Belgium.
Jeanette BoydEuropean Lung Foundation (ELF), Sheffield, UK.
Thomy ToniaEuropean Respiratory Society, Lausanne, Switzerland.
Fabienne Dobbels *Dept of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Kapucijnenvoer 7, Box 7001, Leuven, B-3000, Belgium. Fabienne.dobbels@kuleuven.be.
Michael Kreuter *Mainz Center for Pulmonary Medicine, Dept of Pneumology, Critical Care & Sleep Medicine, Mainz University Medical Center and of Pulmonary, Marienhaus Clinic Mainz, Mainz, Germany.

Funding

European Joint Programme-Rare Diseases (EJP-RD) COCOS-IPF project EJPRD21-045
6 · The paper itself

Abstract

backgroundIdiopathic pulmonary fibrosis (IPF) and progressive pulmonary fibrosis (PPF) are interstitial lung diseases (ILD) that carry a high burden and mortality. IPF/PPF experts and patients call for standardized care, outcome harmonization and holistic management in these complex and devastating diseases, with a focus on person-centeredness. In this cross-sectional international survey study, we aimed to gather information on the person-centred health outcomes European healthcare professionals (HCPs) already use or deem important for use in routine care for IPF/PPF. This work is part of the COCOS-IPF project on developing a Core Outcome Set (COS) for and with patients with IPF/PPF.

methodsWith the input of IPF/PPF experts, psychologists and patients, we developed an online survey for European multidisciplinary HCPs with IPF/PPF expertise. The survey was programmed in Qualtrics

resultsA total of 149 experts, mainly pulmonologists (n = 120, 81%) working in ILD expert centres, from 31 European countries participated. Of the 40 different outcome domains mentioned, the majority referred to `physiological/clinical` (n = 773, 81%) and `life impact` (n = 138, 14%) outcome domains. Of these, `lung function' (n = 280, 29%), 'exercise capacity' (n = 123, 13%) and `quality of life` (n = 103, 11%) were reported as most frequently used person-centred health outcomes. Survey respondents deemed the same three outcome domains the most important for use in the routine clinical IPF/PPF care, supplemented by chest symptoms. Pulmonologists reported mainly about routine use of `lung function` (n = 252, 26%), while allied HCPs put more focus on outcomes related to physical condition and whole body status.

conclusionsHCPs have identified 40 different outcomes domains in a European multidisciplinary survey on person-centred health outcomes in IPF/PPF. Lung function, exercise capacity, quality of life and chest symptoms were rated as the most relevant health outcomes to be assessed routinely in clinical care. These insights can help to support the development of a COS for IPF/PPF clinical care.

Indexed as

Attitude of Health PersonnelDisease ProgressionHealth PersonnelIdiopathic Pulmonary FibrosisPatient-Centered CareCross-Sectional StudiesEuropeFemaleHumansMaleSurveys and QuestionnairesCore Outcome SetIdiopathic pulmonary fibrosisPerson-centred outcomesProgressive Pulmonary Fibrosis

Identifiers

PMID40022111
PMCPMC11871732

What OpenQuestion holds

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LicenceCC BY-NC-ND
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.