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Sarcoidosis in the UK: insights from British Thoracic Society registry data

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 co...

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Autores principales: Thillai, Muhunthan, Chang, William, Chaudhuri, Nazia, Forrest, Ian, Ho, Ling-Pei, Lines, Sarah, Maher, Toby M, Spencer, Lisa G, Spiteri, Monica, Coker, Robina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6424275/
https://www.ncbi.nlm.nih.gov/pubmed/30956798
http://dx.doi.org/10.1136/bmjresp-2018-000357
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author Thillai, Muhunthan
Chang, William
Chaudhuri, Nazia
Forrest, Ian
Ho, Ling-Pei
Lines, Sarah
Maher, Toby M
Spencer, Lisa G
Spiteri, Monica
Coker, Robina
author_facet Thillai, Muhunthan
Chang, William
Chaudhuri, Nazia
Forrest, Ian
Ho, Ling-Pei
Lines, Sarah
Maher, Toby M
Spencer, Lisa G
Spiteri, Monica
Coker, Robina
author_sort Thillai, Muhunthan
collection PubMed
description 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.
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spelling pubmed-64242752019-04-05 Sarcoidosis in the UK: insights from British Thoracic Society registry data Thillai, Muhunthan Chang, William Chaudhuri, Nazia Forrest, Ian Ho, Ling-Pei Lines, Sarah Maher, Toby M Spencer, Lisa G Spiteri, Monica Coker, Robina BMJ Open Respir Res Interstitial Lung Disease 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. BMJ Publishing Group 2019-02-18 /pmc/articles/PMC6424275/ /pubmed/30956798 http://dx.doi.org/10.1136/bmjresp-2018-000357 Text en © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Interstitial Lung Disease
Thillai, Muhunthan
Chang, William
Chaudhuri, Nazia
Forrest, Ian
Ho, Ling-Pei
Lines, Sarah
Maher, Toby M
Spencer, Lisa G
Spiteri, Monica
Coker, Robina
Sarcoidosis in the UK: insights from British Thoracic Society registry data
title Sarcoidosis in the UK: insights from British Thoracic Society registry data
title_full Sarcoidosis in the UK: insights from British Thoracic Society registry data
title_fullStr Sarcoidosis in the UK: insights from British Thoracic Society registry data
title_full_unstemmed Sarcoidosis in the UK: insights from British Thoracic Society registry data
title_short Sarcoidosis in the UK: insights from British Thoracic Society registry data
title_sort sarcoidosis in the uk: insights from british thoracic society registry data
topic Interstitial Lung Disease
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6424275/
https://www.ncbi.nlm.nih.gov/pubmed/30956798
http://dx.doi.org/10.1136/bmjresp-2018-000357
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