A Core Outcome Set for Pulmonary Rehabilitation of patients with COPD: a modified Delphi survey

Abstract

There is high heterogeneity of outcomes and measures reported in pulmonary rehabilitation (PR) trials of people with COPD, which hinders study comparability and benchmarking of PR. We developed a core outcome set (COS) in an attempt to overcome these challenges.

This study was informed by a systematic review and 2 qualitative studies. Outcomes (n=63) were scored in a 2-round modified Delphi survey responded by 2 groups - G1: people with COPD and informal carers and G2: healthcare professionals, researchers, and policy makers. A 9-point Likert scale was used. Outcomes scored 7-9 (crucial) by ≥70% and 1-3 (not that important) by ≤15% of participants from both groups were included in the COS, whilst outcomes that were considered crucial only by one group were further voted in a consensus meeting.

299 people (G1: n=229; G2: n=70) participated in the survey (83% retention), which covered 29 countries/5 continents. After the second round, 6 outcomes were included and 3 were added in the consensus meeting. The final COS contains dyspnoea, exercise capacity, fatigue, health-related quality of life, health behaviours/lifestyle, knowledge about the disease, lower limb muscle function, personal goals, and problematic activities of daily living (Fig.1).

This COS can now be used by different stakeholders. Future research should establish the core measures and investigate the uptake of this COS.