Self-management interventions for adults living with Chronic Obstructive Pulmonary Disease (COPD): The development of a Core Outcome Set for COMPAR-EU project.

Valentina Strammiello,Ena Niño De Guzmán,Estela Camus-García,Hector Pardo-Hernández,Monique Heijmans,Lyudmil Ninov,Dimitris Mavridis,Marta Ballester,Kaisa Immonen,Carola Orrego,Ana Isabel González-González,Claudia Valli,Rosa Suñol,Jessica Beltran

doi:10.1371/journal.pone.0247522

Abstract

A large body of evidence suggests that self-management interventions (SMIs) may improve outcomes in chronic obstructive pulmonary disease (COPD). However, accurate comparisons of the relative effectiveness of SMIs are challenging, partly due to heterogeneity of outcomes across trials and uncertainty about the importance of these outcomes for patients. We aimed to develop a core set of patient-relevant outcomes (COS) for SMIs trials to enhance comparability of interventions and ensure person-centred care. We undertook an innovative approach consisting of four interlinked stages: i) Development of an initial catalogue of outcomes from previous EU-funded projects and/or published studies, ii) Scoping review of reviews on patients and caregivers' perspectives to identify outcomes of interest, iii) Two-round Delphi online survey with patients and patient representatives to rate the importance of outcomes, and iv) Face-to-face consensus workshop with patients, patient representatives, health professionals and researchers to develop the COS. From an initial list of 79 potential outcomes, 16 were included in the COS plus one supplementary outcome relevant to all participants. These were related to patient and caregiver knowledge/competence, self-efficacy, patient activation, self-monitoring, adherence, smoking cessation, COPD symptoms, physical activity, sleep quality, caregiver quality of life, activities of daily living, coping with the disease, participation and decision-making, emergency room visits/admissions and cost effectiveness. The development of the COPD COS for the evaluation of SMIs will increase consistency in the measurement and reporting of outcomes across trials. It will also contribute to more personalized health care and more informed health decisions in clinical practice as patients' preferences regarding COPD outcomes are more systematically included.

Highlights

Chronic Obstructive Pulmonary Disease (COPD) is one of the major causes of morbidity and mortality worldwide [1,2]
Core outcome set for self-management interventions in Chronic Obstructive Pulmonary Disease
We developed an initial catalogue of outcomes from a literature review of two overviews of systematic reviews evaluating the effectiveness of self-management interventions (SMIs) for chronic diseases: i) PRO-STEP (Promoting Self-Management for Chronic Diseases in the EU) [17] and ii) EMPATHiE (Empowering Patients in the Management of Chronic Diseases) [18]

Summary

Introduction

Chronic Obstructive Pulmonary Disease (COPD) is one of the major causes of morbidity and mortality worldwide [1,2]. It is directly related to the prevalence of tobacco smoking, in many countries outdoor and indoor air pollution constitute major risk factors [5,6]. The literature suggests that self-management interventions (SMIs) may improve clinical outcomes, quality of life and reduce costs of chronic conditions, including COPD [7,8]. A Cochrane systematic review showed that SMIs along with support from health professionals improve health-related quality of life while decreasing hospitalizations and emergency department visits of COPD patients [9]. A large body of evidence suggests that self-management interventions (SMIs) may improve outcomes in chronic obstructive pulmonary disease (COPD). We aimed to develop a core set of patient-relevant outcomes (COS) for SMIs trials to enhance comparability of interventions and ensure person-centred care

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Discussion

Conclusion