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Core outcome set for pulmonary rehabilitation of patients with COPD: results of a modified Delphi survey
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  • Published on:
    Response to "Underrepresentation of low- and middle-income countries"
    • Sara Souto Miranda, Lecturer Jean Piaget School of Health, Piaget Institute, V.N. Gaia, Portugal
    • Other Contributors:
      • Isabel Saraiva, President
      • Martijn A. Spruit, Full professor
      • Alda Marques, Professor

    We thank Bickton and colleagues for their interest in reading our article and their commentary.
    We recognize the need to have a balanced representation of low- and middle-income countries (LMICs) in core outcome sets (COS), specifically in pulmonary rehabilitation (PR) as resources for measurement instruments may vary globally and the burden of COPD and need for pulmonary rehabilitation in these regions are undeniable.
    According to the World Bank categories (1), we have included some middle-income countries in our study, from south America (Argentina, Brazil, Colombia, Cuba) and from Asia (not only India, but also the Philippines). Nonetheless, as acknowledged in our COS paper (2), the African and Asian continents were underrepresented.
    Although not stated throughout our paper, with the a priori knowledge of the need to include these continents and LMICs, we took some methodological steps to try to ensure their representation. Indeed, we have contacted several professional and patient associations from these regions to help us recruit participants. The Pan African Thoracic Society was contacted directly. Nonetheless, the procedure to contact is a form on a website (https://panafricanthoracic.org/about-us/contact-us), with no other form of contact provided. No response was ever obtained. We congratulate the newly formed PR Working Group, and we look forward to enhancing our communication chan...

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    Conflict of Interest:
    None declared.
  • Published on:
    Underrepresentation of low- and middle-income countries in "Core outcome set for pulmonary rehabilitation of patients with COPD: results of a modified Delphi survey"
    • FANUEL M BICKTON, Physiotherapist Lung Health Research Group, Malawi-Liverpool-Wellcome Programme, Blantyre, Malawi; Department of Rehabilitation Sciences, S
    • Other Contributors:
      • Abbi-Monique M Bilungula, Physiatrist
      • Alison Lupton-Smith, Physiotherapist
      • Winceslaus Katagira, Physician
      • Jibril Mohammed, Physiotherapist

    If a core outcome set (COS) to a global burden of disease is to be globally relevant and applicable, methodological efforts to ensure equal representation of low- and middle-income countries (LMICs) and high-income countries (HICs) at all stages of its development are needed (1, 2). This is due to the differences in disease patterns, healthcare resources, culture, and biomedical beliefs, which may influence outcome priorities (3, 4). A case in point is a study by Van Rijssen et al (5), where participants from Europe, the USA, and Asia did not reach the same consensus on the final patient-reported COS for pancreatic cancer, and Asian participants did not reach a consensus on any outcomes included in the final set.

    We read with interest your COS for pulmonary rehabilitation (PR) of patients with COPD in the 2023 September issue of Thorax "(6). We noticed the under-representation of LMICs, especially in Asia and Africa, in your development of the COS. Of the 29 and 27 countries where you recruited participants in the first and second rounds of your Delphi survey, respectively, Asia was represented by only one participant from India, whilst no participant was recruited from Africa. Most participants were from HICs in Europe including the Netherlands, Portugal, United Kingdom, Australia, and Spain.

    This underrepresentation of LMICs is noteworthy given that, firstly, the burden of chronic respiratory diseases (including COPD) is greater in LMICs, both in terms...

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    Conflict of Interest:
    None declared.