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


Journal

PloS one
ISSN: 1932-6203
Titre abrégé: PLoS One
Pays: United States
ID NLM: 101285081

Informations de publication

Date de publication:
2021
Historique:
received: 04 11 2020
accepted: 09 02 2021
entrez: 1 3 2021
pubmed: 2 3 2021
medline: 14 9 2021
Statut: epublish

Résumé

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.

Sections du résumé

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.

Identifiants

pubmed: 33647039
doi: 10.1371/journal.pone.0247522
pii: PONE-D-20-34041
pmc: PMC7920347
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

e0247522

Déclaration de conflit d'intérêts

The authors have declared that no competing interests exist.

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Auteurs

Estela Camus-García (E)

Avedis Donabedian Research Institute (FAD), Universitat Autonòma de Barcelona, Barcelona, Spain.

Ana Isabel González-González (AI)

Avedis Donabedian Research Institute (FAD), Universitat Autonòma de Barcelona, Barcelona, Spain.
Institute of General Practice, Goethe University, Frankfurt, Germany.
Red de Investigación en Servicios de Salud en Enfermedades Crónicas (REDISSEC), Spain.

Monique Heijmans (M)

Netherlands Institute for Health Services Research (NIVEL), Utrecht, The Netherlands.

Ena Niño de Guzmán (E)

Iberoamerican Cochrane Centre Barcelona, Department of Clinical Epidemiology and Public Health, Biomedical Research Institute San Pau (IIB Sant Pau), Barcelona, Spain.

Claudia Valli (C)

Department of Paediatrics, Obstetrics, Gynaecology and Preventive Medicine, Universidad Atónoma de Barcelona, Barcelona, Spain.
Iberoamerican Cochrane Centre Barcelona, Biomedical Research Institute San Pau (IIB Sant Pau), Barcelona, Spain.

Jessica Beltran (J)

Iberoamerican Cochrane Centre Barcelona, Biomedical Research Institute San Pau (IIB Sant Pau), Barcelona, Spain.

Hector Pardo-Hernández (H)

Iberoamerican Cochrane Centre Barcelona, Biomedical Research Institute San Pau (IIB Sant Pau) - CIBER Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain.

Lyudmil Ninov (L)

European Patients' Forum (EPF), Brussels, Belgium.

Valentina Strammiello (V)

European Patients' Forum (EPF), Brussels, Belgium.

Kaisa Immonen (K)

European Patients' Forum (EPF), Brussels, Belgium.

Dimitris Mavridis (D)

Department of Primary Education, University of Ioannina, Ioannina, Greece.

Marta Ballester (M)

Avedis Donabedian Research Institute (FAD), Universitat Autonòma de Barcelona, Barcelona, Spain.
Red de Investigación en Servicios de Salud en Enfermedades Crónicas (REDISSEC), Spain.

Rosa Suñol (R)

Avedis Donabedian Research Institute (FAD), Universitat Autonòma de Barcelona, Barcelona, Spain.
Red de Investigación en Servicios de Salud en Enfermedades Crónicas (REDISSEC), Spain.

Carola Orrego (C)

Avedis Donabedian Research Institute (FAD), Universitat Autonòma de Barcelona, Barcelona, Spain.
Red de Investigación en Servicios de Salud en Enfermedades Crónicas (REDISSEC), Spain.

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