Introduction There is high heterogeneity of outcomes and measures reported in pulmonary rehabilitation (PR) trials of people with chronic obstructive pulmonary disease (COPD). This hinders study comparability and benchmarking of PR. We have developed a core outcome set (COS) to overcome these challenges.
Methods This study was informed by a systematic review and two qualitative studies and had patient involvement since its inception. A two-round Delphi survey was available in seven languages. Outcomes (n=63) scored 7–9 (crucial) by ≥70% of the participants and 1–3 (not that important) by ≤15% of participants from both groups in the Likert scale were automatically included in the COS, while outcomes that were considered crucial by only one of the groups were further discussed by the authors in a meeting.
Results A total of 299 people (n=229 healthcare professionals/researchers/policy-makers; n=70 people with COPD and informal caregivers) participated in the survey (83% retention), which covered 29 countries/five continents. After the second round, six outcomes were included and three were added in the meeting. The final COS contains dyspnoea, fatigue, functional exercise capacity, health-related quality of life, health behaviours/lifestyle, knowledge about the disease, lower limb muscle function, personal goals and problematic activities of daily living.
Conclusion A COS for PR of people with COPD is now available and can be used by different stakeholders to improve consistency and comparability of studies, benchmark PR and improve the quality of care provided. Future research should establish the core measures and investigate the uptake of this COS.
- pulmonary rehabilitation
- respiratory measurement
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information. Not applicable.
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Presented at European Respiratory Society's International Congress 2023
Contributors SS-M contributed to the conceptualisation, methodology, formal analysis, investigation, writing—original draft, visualisation and project administration, and is the guarantor of this work. IS contributed to methodology, validation and writing—review and editing. MAS and AM contributed to conceptualisation, methodology, software, validation, resources, writing—review and editing, supervision and funding acquisition.
Funding This work was funded by Fundação para a Ciência e a Tecnologia (FCT) through the European Social Fund and Programa Operacional Regional do Centro, under the Ph.D. grant SFRH/BD/146134/2019 and the project UIDB/04501/2020.
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Competing interests None declared.
Patient and public involvement statement This study had a patient representative involved in all stages of the process.
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