First steps at implementing value based healthcare internationally in sarcoidosis: comparing outcomes

Introduction: Routine and international comparison of clinical outcomes based on a standardized outcome indicator set in patients with pulmonary sarcoidosis is lacking. Objectives: To define a consensus driven outcome set using the value-based healthcare methodology enabling international comparison of best practice in pulmonary sarcoidosis; and to compare outcomes between Centers of Excellence. Methods: A consensus-driven modified Delphi method was employed to develop the outcome indicator set and co-variable set for patients with pulmonary sarcoidosis. In order to draw conclusions from the outcome measures, the course of pulmonary function tests (PFTs) FEV1, FVC and DLCOc (% predicted) was retrospectively evaluated. Linear mixed models were estimated with changes over time in variables as primary endpoints for comparison of outcomes between 6 interstitial lung disease (ILD) centers. Results: An outcome indicator set for pulmonary sarcoidosis was developed including mortality, PFTs, quality of life, soluble interleukine-2 receptor (sIL-2R), weight, clinical outcome status and osteoporosis. 533 patients were included in the retrospective cohort. We found no differences in the lung function trend (FEV1, FVC and DLCOc) over a period of 2 years between centers. Centers did however differ in baseline FVC, with the highest starting at 85.4% predicted and the lowest at 66.7% predicted (p= 0.052). Conclusions: Collecting outcomes in pulmonary sarcoidosis internationally is feasible. The use of a standardized outcome indicator set will enable international comparison. Differences in outcomes could facilitate improvements in quality of care for pulmonary sarcoidosis.