Estela Camus-García1, Ana Isabel González-González1,2,3, Monique Heijmans4, Ena Niño de Guzmán5, Claudia Valli6,7, Jessica Beltran7, Hector Pardo-Hernández8, Lyudmil Ninov9, Valentina Strammiello9, Kaisa Immonen9, Dimitris Mavridis10, Marta Ballester1,3, Rosa Suñol1,3, Carola Orrego1,3. 1. Avedis Donabedian Research Institute (FAD), Universitat Autonòma de Barcelona, Barcelona, Spain. 2. Institute of General Practice, Goethe University, Frankfurt, Germany. 3. Red de Investigación en Servicios de Salud en Enfermedades Crónicas (REDISSEC), Spain. 4. Netherlands Institute for Health Services Research (NIVEL), Utrecht, The Netherlands. 5. Iberoamerican Cochrane Centre Barcelona, Department of Clinical Epidemiology and Public Health, Biomedical Research Institute San Pau (IIB Sant Pau), Barcelona, Spain. 6. Department of Paediatrics, Obstetrics, Gynaecology and Preventive Medicine, Universidad Atónoma de Barcelona, Barcelona, Spain. 7. Iberoamerican Cochrane Centre Barcelona, Biomedical Research Institute San Pau (IIB Sant Pau), Barcelona, Spain. 8. Iberoamerican Cochrane Centre Barcelona, Biomedical Research Institute San Pau (IIB Sant Pau) - CIBER Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain. 9. European Patients' Forum (EPF), Brussels, Belgium. 10. Department of Primary Education, University of Ioannina, Ioannina, Greece.
Abstract
BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
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