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International perspectives on outcome measurement in pulmonary rehabilitation of people with COPD: A qualitative study

  • Sara Souto-Miranda
    Affiliations
    Respiratory Research and Rehabilitation Laboratory (Lab3R), School of Health Sciences (ESSUA) and Institute of Biomedicine (iBiMED), University of Aveiro, Aveiro, Portugal

    Department of Medical Sciences (DCM), University of Aveiro, Aveiro, Portugal

    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
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  • Anouk W. Vaes
    Affiliations
    Department of Research and Development, Ciro, Horn, the Netherlands
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  • Rainer Gloeckl
    Affiliations
    Institute for Pulmonary Rehabilitation Research, Schoen Klinik Berchtesgadener Land, Schoenau am Koenigssee, Germany
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  • Anita Grongstad
    Affiliations
    LHL Hospital Gardermoen, Jessheim, Norway
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  • Martijn A. Spruit
    Affiliations
    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

    Department of Research and Development, Ciro, Horn, the Netherlands
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  • Alda Marques
    Correspondence
    Corresponding author. Lab3R-Respiratory Research and Rehabilitation Laboratory, School of Health Sciences and Institute of Biomedicine, University of Aveiro, Agras do Crasto - Campus Universitário de Santiago, Edifício 30, 3810-193, Aveiro, Portugal.
    Affiliations
    Respiratory Research and Rehabilitation Laboratory (Lab3R), School of Health Sciences (ESSUA) and Institute of Biomedicine (iBiMED), University of Aveiro, Aveiro, Portugal
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      Highlights

      • There is high heterogeneity of outcomes measured in pulmonary rehabilitation.
      • It hinders benchmarking and evidence synthesis, hence a core outcome set is needed.
      • Different stakeholders from 14 countries were interviewed.
      • 28 crucial outcomes and advantages/disadvantages of 68 measures were identified.
      • Meaningful outcomes, similar assessment and feasible measures across settings are needed.

      Abstract

      Background

      There is high heterogeneity of outcomes and measures reported in the literature for pulmonary rehabilitation (PR), which might limit benchmarking and an effective evidence synthesis. A core outcome set (COS) can minimise this problem. It is however unclear which outcomes and measures are most important and suitable for different stakeholders.

      Methods

      A multicentre qualitative study with one-to-one semi-structured interviews with people with chronic obstructive pulmonary disease (COPD), healthcare professionals (HCPs), researchers and policy makers was conducted. Manifest content analysis was conducted to explore the frequency of outcomes viewed as crucial or not. Thematic analysis was performed to better understand stakeholders’ views.

      Results

      37 participants (17 people with COPD and 20 HCPs/researchers/policy makers) from 14 countries and 4 continents were included. Participants expressed that i) core outcomes need to be meaningful to people with COPD and show PR benefits; ii) there should be comprehensive assessment and similar outcomes across settings; iii) a balance between optimal and practical measures is needed; iv) the COS is needed to benchmark PR and advance knowledge; and v) reluctance to change outcomes/measures used by HCPs and using the COS as a maximum set of outcomes might be the pitfalls. 28 outcomes were identified as crucial, and 12 as not crucial.

      Conclusions

      This study provided important insights into outcome measurement in PR from the perspectives of different key international stakeholders and a list of outcomes that will inform a future consensus study.

      Keywords

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