Article Text
Abstract
Introduction The British Thoracic Society Sarcoidosis Registry allows physicians to record clinical data after gaining written consent from patients. The registry’s aim is to phenotype sarcoidosis in the UK.
Methods Between February 2013 and July 2017, demographic details for 308 patients (with complete clinical data for 205 patients) presenting to 24 UK hospitals were recorded. This data was analysed to detail methods of presentation, diagnosis and management.
Results Fatigue was a significant complaint, affecting 30% of all patients. The most prevalent CT findings were nodules (in 77% of cases) with traction bronchiectasis (11%), distortion (9%) and ground glass (5%) less prominent. Of 205 patients with complete clinical data, only 64% had a diagnostic tissue biopsy. 35% of all patients underwent endobronchial ultrasound-guided transbronchial needle aspirate (EBUS-TBNA) with 15% having a transbronchial biopsy. Use of EBUS-TBNA showed an overall increase over time, from 28% of all patients in 2013 to 43% in 2016. The most common steroid sparing treatment was methotrexate, but 42% of patients were not initiated on any pharmacological treatment at the time of inclusion.
Discussion Fatigue was common and has shown association with poor quality of life. We therefore suggest using a fatigue questionnaire as part of all new patient assessments. It may be that EBUS-TBNA should be reserved for cases of stage I or II disease where there is a reported higher yield than using transbronchial biopsy alone. Bronchoalveolar lavage was not widely used in our data, but it is generally a safe and useful adjunct and should be used more widely.
- sarcoidosis
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Footnotes
Contributors All authors contributed to the planning and drafting of the manuscript, MT and RC took overall responsibility for the final document, All authors approved the final manuscript.
Funding The BTS ILD Registry (including the Sarcoidosis Registry) is fully funded by British Thoracic Society. A grant from HQIP contributed to the initial development of the Registry (from 2012 to 2014) and the data collection software was enhanced in 2014 due to financial assistance from Boehringer Ingelheim and InterMune.
Competing interests NC and MT received funding from Roche, BI; LGS and IF received funding from BI. TMM received funding from Roche, BI, Biogen, Bayer, GSK, UCB,
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.