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BMJ Open Respir Res. 2019 Feb 18;6(1):e000394. doi: 10.1136/bmjresp-2018-000394. eCollection 2019.

First patient-centred set of outcomes for pulmonary sarcoidosis: a multicentre initiative.

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Department of Value-Based Healthcare, St. Antonius Hospital, Nieuwegein, The Netherlands.
Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Radboud University Medical Center, Nijmegen, The Netherlands.
Division of Heart and Lungs, University Medical Centre Utrecht, Utrecht, The Netherlands.
Interstitial Lung Diseases Center of Excellence, Department of Pulmonology, St. Antonius Hospital, Utrecht, The Netherlands.
Department of Pulmonary Medicine, Cleveland Clinic, Cleveland, Ohio, USA.
Department of Medicine, University of Cincinnati Medical Center, Cincinnati, Ohio, USA.
Interstitial Lung Disease Unit, Royal Brompton Hospital, Imperial College, London, UK.
Department of Respiratory Medicine, Universitaire Ziekenhuizen Leuven, Leuven, Belgium.
Department of Interstitial Lung Disease, Imperial College London-Royal Brompton Campus, London, UK.
Department of Pulmonary Medicine, Erasmus MC, Rotterdam, The Netherlands.
Department of Internal Medicine, University Medical Centre Utrecht, Utrecht, The Netherlands.



Routine and international comparison of clinical outcomes enabling identification of best practices for patients with pulmonary sarcoidosis is lacking. The aim of this study was to develop a standard set of outcome measures for pulmonary sarcoidosis, using the value-based healthcare principles.


Six expert clinics for interstitial lung diseases in four countries participated in a consensus-driven RAND-modified Delphi study. A mixed-method approach was applied for the identification of an outcome measures set and initial conditions for patients with pulmonary sarcoidosis. The expert team consisted of multidisciplinary professionals (n=14) from Cleveland Clinic, Cincinnati MC, Erasmus MC, Leuven UZ, Royal Brompton and St. Antonius Hospital. During a ranking process, participants were instructed to rank variables on a scale from 1 to 10 based on whether it has (1) impact of the outcome on quality of life, (2) impact of quality of care on the outcome and (3) the number of patients negatively affected by the outcome.


An outcome measures set was defined consisting of seven outcome measures: mortality, pulmonary function, soluble interleukin-2 receptor change as an activity biomarker, weight gain, quality of life, osteoporosis and clinical outcome status.


Collecting outcomes in pulmonary sarcoidosis internationally and the use of a broadly accepted set can enable international comparison. Differences in outcomes can potentially be used as a starting point for quality improvement initiatives.


outcomes; pulmonary sarcoidosis; value-based healthcare

Conflict of interest statement

Competing interests: RB reports grants and personal fees from Mallinckrodt, grants and personal fees from Genentech, grants from Bayer, grants from Gilead, grants from Astra Zeneca, grants from Novartis, outside the submitted work. DC reports non-financial support from Gilead, grants and other from Mallinkrodt, non-financial support from Araim, outside the submitted work. EAR reports personal fees from Roche, personal fees from Boehringer Ingelheim, outside the submitted work. JCG reports grants from ZonMw, during the conduct of the study. WW reports grants from Roche, grants from Boehringer Ingelheim payed to his institution, outside the submitted work.

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