Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set

Abstract

Introduction: Pulmonary rehabilitation implies a comprehensive assessment. Although several outcomes are commonly measured, those are selected mainly by health professionals and researchers, with the voice of patients and informal caregivers being minimally captured. Qualitative studies are fundamental to enhance our knowledge on perspectives of different stakeholders involved in pulmonary rehabilitation. Objective: This study aimed to explore the views of different stakeholders on outcomes of pulmonary rehabilitation, contributing to one of the stages of a core outcome set for pulmonary rehabilitation in patients with chronic obstructive pulmonary disease (COPD). Methods: Semi-structured interviews were conducted with 12 patients with COPD, 11 informal carers and 10 health professionals. Data were analysed with content analysis, followed by thematic analysis to gain deeper understanding of the different perspectives. Results: A total of 44 outcomes were identified, being the most reported ‘improving functional performance’ (67%) and ‘reducing and taking control over dyspnoea’ (64%). Five relevant themes across stakeholders were generated: having a healthy mind in a healthy body; I can(’t) do it; feeling fulfilled; knowing more, doing better and avoiding doctors and expenses. Although perspectives were mostly consensual, some outcomes were only valued by health professionals (e.g. pulmonary function) or by patients and informal carers (e.g. quality of sleep). Conclusion: Views of the different stakeholders on outcomes of pulmonary rehabilitation were similar although, some specificities existed. Comprehensive assessments are needed to reflect what is valued by the different stakeholders in pulmonary rehabilitation. This study contributed to a future core outcome set in this field.