Identifying a core outcome set for pulmonary sarcoidosis research - the Foundation for Sarcoidosis Research - Sarcoidosis Clinical OUtcomes Taskforce (SCOUT).

Autor:	Harman NL; Department of Health Data Science, University of Liverpool, Liverpool, UK., Gorst SL; Department of Health Data Science, University of Liverpool, Liverpool, UK., Williamson PR; Department of Health Data Science, University of Liverpool, Liverpool, UK., Barnathan ES; Janssen Research and Development, LLC., Baughman RP; Department of Medicine, University of Cincinnati Medical Center, Cincinnati, OH, USA., Judson MA; Department of Medicine, Division of Pulmonary and Critical Care Medicine, Albany Medical College, Albany, New York, USA., Junk H; Patient Advocate - Foundation for Sarcoidosis Research., Kampstra NA; Dept of Value-Based Healthcare, St Antonius Hospital, Nieuwegein, The Netherlands; Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands.; Interstitial Lung Diseases Centre of Excellence, Department of Pulmonology, St Antonius Hospital, Nieuwegein, the Netherlands., Sullivan EJ; Insmed, Incorporated, Bridgewater NJ, USA., Victorson DE; Northwestern University Feinberg School of Medicine, Evanston, IL, USA., Walton MK; Janssen Research and Development, Titusville, NJ, USA., Al-Hakim T; The Foundation for Sarcoidosis Research, Chicago, IL, USA., Nabulsi H; The Foundation for Sarcoidosis Research, Chicago, IL, USA., Singh N; The Foundation for Sarcoidosis Research, Chicago, IL, USA., Grutters JC; Interstitial Lung Diseases Centre of Excellence, Department of Pulmonology, St Antonius Hospital, Nieuwegein, the Netherlands.; Division of Heart & Lungs, University Medical Center Utrecht, Utrecht, the Netherlands., Culver DA; Department of Pulmonary, Medicine, Respiratory Institute, at Cleveland Clinic, Cleveland, OH, USA.
Jazyk:	angličtina
Zdroj:	Sarcoidosis, vasculitis, and diffuse lung diseases : official journal of WASOG [Sarcoidosis Vasc Diffuse Lung Dis] 2022; Vol. 39 (3), pp. e2022030. Date of Electronic Publication: 2022 Sep 23.
DOI:	10.36141/svdld.v39i3.12319
Abstrakt:	Background: 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: 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: 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: 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. Competing Interests: 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. (Copyright: © 2021 SARCOIDOSIS VASCULITIS AND DIFFUSE LUNG DISEASES.)
Databáze:	MEDLINE
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