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Rehabilitation
Original research
Core outcome set for pulmonary rehabilitation of patients with COPD: results of a modified Delphi survey
  1. Sara Souto-Miranda1,2,3,4,
  2. Isabel Saraiva5,
  3. Martijn A Spruit2,6,
  4. Alda Marques1,3
  1. 1 Respiratory Research and Rehabilitation Laboratory (Lab3R), School of Health Sciences (ESSUA), University of Aveiro, Aveiro, Portugal
  2. 2 Department of Respiratory Medicine, Maastricht University Medical Centre, NUTRIM School of Nutrition and Translational Research in Metabolism, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands
  3. 3 Institute of Biomedicine (iBiMED), University of Aveiro, Aveiro, Portugal
  4. 4 Department of Medical Sciences (DCM), University of Aveiro, Aveiro, Portugal
  5. 5 Associação Respira, Lisbon, Portugal
  6. 6 Department of Research and Development, Ciro, Horn, The Netherlands
  1. Correspondence to Dr Alda Marques, Institute of Biomedicine, University of Aveiro, Aveiro 3810-193, Portugal; amarques{at}ua.pt

Abstract

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.

https://doi.org/10.1136/thorax-2023-220522

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    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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    Footnotes

    • Twitter @sara_souto

    • 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.

    • Map disclaimer The inclusion of any map (including the depiction of any boundaries therein), or of any geographic or locational reference, does not imply the expression of any opinion whatsoever on the part of BMJ concerning the legal status of any country, territory, jurisdiction or area or of its authorities. Any such expression remains solely that of the relevant source and is not endorsed by BMJ. Maps are provided without any warranty of any kind, either express or implied.

    • Competing interests None declared.

    • Patient and public involvement statement This study had a patient representative involved in all stages of the process.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.