Article Text
Abstract
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 value-based healthcare principles.
Methods 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.
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.
- pulmonary sarcoidosis
- value-based healthcare
- outcomes
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Footnotes
Contributors NAK, JCG, FTB, DAC, RPB, EAR, WW, VK, MSW, DHB, PJvdW and PBvdN (hereinafter referred to as ‘all authors’) contributed to the conception and design of the study. NAK was the major contributor in writing the manuscript. NAK, JCG, PJvdW and PBvdN analysed and interpreted the data. All authors contributed to the interpretation of the results. All authors critically revised the manuscript for important intellectual content. All authors read and approved the final manuscript.
Funding This work was supported by The Netherlands Organisation for Health Research and Development (ZonMw) under project number 842001005.
Disclaimer The funders had no role in the study design, data collection, analysis and decision in where to publish the manuscript.
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.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.