Identifying a core outcome set for pulmonary sarcoidosis research - the Foundation for Sarcoidosis Research - Sarcoidosis Clinical OUtcomes Taskforce (SCOUT).
Core outcome set
Outcomes
Pulmonary sarcoidosis
Journal
Sarcoidosis, vasculitis, and diffuse lung diseases : official journal of WASOG
ISSN: 2532-179X
Titre abrégé: Sarcoidosis Vasc Diffuse Lung Dis
Pays: Italy
ID NLM: 9610928
Informations de publication
Date de publication:
2022
2022
Historique:
received:
23
09
2021
accepted:
13
07
2022
entrez:
15
2
2023
pubmed:
16
2
2023
medline:
16
2
2023
Statut:
ppublish
Résumé
Pulmonary sarcoidosis is a rare granulomatous disease of unknown aetiology. Heterogeneity in the outcomes measured in trials of treatment for pulmonary sarcoidosis has impacted on the ability to systematically compare findings, contributing to research inefficiency. The FSR-SCOUT study has aimed to address this heterogeneity by developing a core outcome set that represents a patient and health professional consensus on the most important outcomes to measure in future research for the treatment of pulmonary sarcoidosis. systematic review of trial registries, narrative synthesis of published qualitative literature on the patient experience and results of a patient survey contributed to the development of a comprehensive list of outcomes that were rated in a two round online Delphi survey. The Delphi survey was completed by patients/carers and health professionals and the results discussed and ratified at an online consensus meeting. 259 patients/carers and 51 health professionals completed both rounds of the Delphi survey. A pre-agreed definition of consensus was applied and the results discussed at an online consensus meeting attended by 17 patients and 7 health professionals). Fifteen outcomes, across five domains (physiological/clinical, treatment, resource use, quality of life, and death), reached the definition of consensus and were included in the core outcome set. The core outcome set represents a patient and health professional consensus on the most important outcomes for pulmonary sarcoidosis research. The use of the core outcome set in future trials, and efforts to validate its components, will enhance the relevance of trials to stakeholders and will increase the opportunity for the research to contribute to evidence synthesis.
Sections du résumé
Background
UNASSIGNED
Pulmonary sarcoidosis is a rare granulomatous disease of unknown aetiology. Heterogeneity in the outcomes measured in trials of treatment for pulmonary sarcoidosis has impacted on the ability to systematically compare findings, contributing to research inefficiency. The FSR-SCOUT study has aimed to address this heterogeneity by developing a core outcome set that represents a patient and health professional consensus on the most important outcomes to measure in future research for the treatment of pulmonary sarcoidosis.
Research design and methods
UNASSIGNED
systematic review of trial registries, narrative synthesis of published qualitative literature on the patient experience and results of a patient survey contributed to the development of a comprehensive list of outcomes that were rated in a two round online Delphi survey. The Delphi survey was completed by patients/carers and health professionals and the results discussed and ratified at an online consensus meeting.
Results
UNASSIGNED
259 patients/carers and 51 health professionals completed both rounds of the Delphi survey. A pre-agreed definition of consensus was applied and the results discussed at an online consensus meeting attended by 17 patients and 7 health professionals). Fifteen outcomes, across five domains (physiological/clinical, treatment, resource use, quality of life, and death), reached the definition of consensus and were included in the core outcome set.
Conclusions
UNASSIGNED
The core outcome set represents a patient and health professional consensus on the most important outcomes for pulmonary sarcoidosis research. The use of the core outcome set in future trials, and efforts to validate its components, will enhance the relevance of trials to stakeholders and will increase the opportunity for the research to contribute to evidence synthesis.
Identifiants
pubmed: 36791046
doi: 10.36141/svdld.v39i3.12319
pii: SVDLD-39-30
pmc: PMC9766848
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e2022030Informations de copyright
Copyright: © 2021 SARCOIDOSIS VASCULITIS AND DIFFUSE LUNG DISEASES.
Déclaration de conflit d'intérêts
NLH, SLG, PRW, RPB, MAJ, NAK, DEV, JCG, DAC have no competing interests. ESB is an employee of Janssen Research and Development, LLC, who has sponsored research studies in Sarcoidosis. EJS is an employee of Insmed Incorporated. MW employee of Janssen Research & Development. HJ is a sarcoidosis patient. TA-H, HN and NS were employed by the funder (The Foundation for Sarcoidosis Research) during the research.
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