Core Outcome Measures in Effectiveness Trials

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

General Information

Introduction 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 valuebased healthcare principles.

Methods Six expert clinics for interstitial lung diseases in
four countries participated in a consensus-driven RANDmodified
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.

Results 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.

Discussion 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.

Kampstra, Nynke A. Grutters, Jan C. van Beek, Frouke T. Culver, Daniel A. Baughman, Robert P. Renzoni, Elisabetta A. Wuyts, Wim Kouranos, Vaslis Wijsenbeek, Marlies S. Biesma, Douwe H. van der Wees, Philip J. van der Nat, Paul B.


BMJ Open Respiratory Research
Further Study Information

Funding source(s):

Health Area

Disease Category
Lungs & airways

Disease Name

Target Population

Age Range


Nature / type of Intervention


Delphi process
Literature review
Semi structured discussion

Stakeholders Involved

Clinical experts

Study Type

COS for practice

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