Abstract
Our study presents findings on a previously developed standard set of clinical outcome data for pulmonary sarcoidosis patients. We aimed to assess whether changes in outcome varied between the different centres and to evaluate the feasibility of collecting the standard set retrospectively.
This retrospective observational comparative benchmark study included six interstitial lung disease expert centres based in the Netherlands, Belgium, the UK and the USA. The standard set of outcome measures included 1) mortality, 2) changes in pulmonary function (forced vital capacity (FVC), forced expiratory volume in 1 s, diffusing capacity of the lung for carbon monoxide), 3) soluble interleukin-2 receptor (sIL-2R) change, 4) weight changes, 5) quality-of-life (QoL) measures, 6) osteoporosis and 7) clinical outcome status (COS). Data collection was considered feasible if the data were collected in ≥80% of all patients.
509 patients were included in the retrospective cohort. In total six patients died, with a mean survival of 38±23.4 months after the diagnosis. Centres varied in mean baseline FVC, ranging from 110 (95% CI 92–124)% predicted to 99 (95% CI 97–123)% pred. Mean baseline body mass index (BMI) of patients in the different centres varied between 27 (95% CI 23.6–29.4) kg·m−2 and 31.8 (95% CI 28.1–35.6) kg·m−2. 310 (60.9%) patients were still on systemic therapy 2 years after the diagnosis. It was feasible to measure mortality, changes in pulmonary function, weight changes and COS. It is not (yet) feasible to retrospectively collect sIL-2R, osteoporosis and QoL data internationally.
This study shows that data collection for the standard set of outcome measures for pulmonary sarcoidosis was feasible for four out of seven outcome measures. Trends in pulmonary function and BMI were similar for different hospitals when comparing different practices.
Abstract
Clinical outcome data have been used to compare outcomes in pulmonary sarcoidosis patients and improve care delivery. Data collection for the standard set of outcome measures for pulmonary sarcoidosis was feasible for four out of seven outcome measures. http://bit.ly/2F8bQ6s
Footnotes
Support statement: This work was supported by The Netherlands Organisation for Health Research and Development (ZonMw) under project number 842001005. The funder had no role in the study design, data collection, analysis or decision of where to publish the manuscript. Funding information for this article has been deposited with the Crossref Funder Registry.
Author contributions: All authors contributed to the conception and design of the study. N.A. Kampstra wrote the first draft of the manuscript. N.A. Kampstra, M.J.C. Eijkemans, L.M. Dijksman and P. Zanen analysed and interpreted the data. N.A. Kampstra and P. Zanen had full access to all data in the study, and take responsibility for the integrity of the data and accuracy of the data analysis. All authors contributed to the analysis and interpretation, and contributed to the drafting of the article. All authors contributed to the revision of the article for important intellectual content. All authors read and approved the final manuscript.
Conflict of interest: N.A. Kampstra has nothing to disclose.
Conflict of interest: P.B. Van der Nat has nothing to disclose.
Conflict of interest: L.M. Dijksman has nothing to disclose.
Conflict of interest: F.T. van Beek has nothing to disclose.
Conflict of interest: D.A. Culver reports nonfinancial support from Gilead, grants and other support from Mallinkrodt, and nonfinancial support from Araim, outside the submitted work.
Conflict of interest: R.P. Baughman has nothing to disclose.
Conflict of interest: E.A. Renzoni reports personal fees from Roche and Boehringer outside the submitted work.
Conflict of interest: W. Wuyts reports grants from Roche and Boehringer Ingelheim paid to his institution outside the submitted work.
Conflict of interest: V. Kouranos has nothing to disclose.
Conflict of interest: P. Zanen has nothing to disclose.
Conflict of interest: M.S. Wijsenbeek has nothing to disclose.
Conflict of interest: M.J.C. Eijkemans has nothing to disclose.
Conflict of interest: D.H. Biesma has nothing to disclose.
Conflict of interest: P.J. van der Wees has nothing to disclose.
Conflict of interest: J.C. Grutters reports grants from ZonMw during the conduct of the study.
- Received April 12, 2019.
- Accepted August 19, 2019.
- Copyright ©ERS 2019
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