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The Burden of Sarcoidosis Symptoms from a Patient Perspective
PURPOSE: The clinical manifestations of sarcoidosis vary widely, depending on the intensity of the inflammation and the organ systems affected. Hence, sarcoidosis patients may suffer from a great variety of symptoms. The aim of this study was to compare the self-reported burden of sarcoidosis patien...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer US
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6486948/ https://www.ncbi.nlm.nih.gov/pubmed/30778661 http://dx.doi.org/10.1007/s00408-019-00206-7 |
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author | Voortman, M. Hendriks, C. M. R. Elfferich, M. D. P. Bonella, F. Møller, J. De Vries, J. Costabel, U. Drent, M. |
author_facet | Voortman, M. Hendriks, C. M. R. Elfferich, M. D. P. Bonella, F. Møller, J. De Vries, J. Costabel, U. Drent, M. |
author_sort | Voortman, M. |
collection | PubMed |
description | PURPOSE: The clinical manifestations of sarcoidosis vary widely, depending on the intensity of the inflammation and the organ systems affected. Hence, sarcoidosis patients may suffer from a great variety of symptoms. The aim of this study was to compare the self-reported burden of sarcoidosis patients in Denmark, Germany and the Netherlands, especially the prevalence of fatigue and small fiber neuropathy (SFN)-related symptoms, as well as differences in treatment strategies. METHODS: A cross-sectional web-based anonymous survey about complaints was conducted among sarcoidosis patients. Patients were invited to take part through the sarcoidosis patient societies as well as through outpatient sarcoidosis clinics in these countries. RESULTS: The questionnaire was completed by 1072 sarcoidosis patients (152 Danish, 532 German and 388 Dutch). Almost all patients reported having sarcoidosis-associated symptoms (organ-related as well as non-specific, non-organ related). Fatigue was reported by almost all respondents (90%), followed by pulmonary symptoms (72.4%). More than 50% of the respondents were being treated with prednisone, which was comparable in all three countries. In contrast, second- and third-line treatment differed substantially between Denmark, Germany and the Netherlands. CONCLUSION: Sarcoidosis patients in Denmark, Germany and the Netherlands present with similar self-reported symptoms, organ-related as well as non-specific, non-organ related. Fatigue (90%) and symptoms associated with SFN (86%) were highly prevalent in all three countries. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s00408-019-00206-7) contains supplementary material, which is available to authorized users. |
format | Online Article Text |
id | pubmed-6486948 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Springer US |
record_format | MEDLINE/PubMed |
spelling | pubmed-64869482019-05-15 The Burden of Sarcoidosis Symptoms from a Patient Perspective Voortman, M. Hendriks, C. M. R. Elfferich, M. D. P. Bonella, F. Møller, J. De Vries, J. Costabel, U. Drent, M. Lung Interstitial Lung Disease PURPOSE: The clinical manifestations of sarcoidosis vary widely, depending on the intensity of the inflammation and the organ systems affected. Hence, sarcoidosis patients may suffer from a great variety of symptoms. The aim of this study was to compare the self-reported burden of sarcoidosis patients in Denmark, Germany and the Netherlands, especially the prevalence of fatigue and small fiber neuropathy (SFN)-related symptoms, as well as differences in treatment strategies. METHODS: A cross-sectional web-based anonymous survey about complaints was conducted among sarcoidosis patients. Patients were invited to take part through the sarcoidosis patient societies as well as through outpatient sarcoidosis clinics in these countries. RESULTS: The questionnaire was completed by 1072 sarcoidosis patients (152 Danish, 532 German and 388 Dutch). Almost all patients reported having sarcoidosis-associated symptoms (organ-related as well as non-specific, non-organ related). Fatigue was reported by almost all respondents (90%), followed by pulmonary symptoms (72.4%). More than 50% of the respondents were being treated with prednisone, which was comparable in all three countries. In contrast, second- and third-line treatment differed substantially between Denmark, Germany and the Netherlands. CONCLUSION: Sarcoidosis patients in Denmark, Germany and the Netherlands present with similar self-reported symptoms, organ-related as well as non-specific, non-organ related. Fatigue (90%) and symptoms associated with SFN (86%) were highly prevalent in all three countries. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s00408-019-00206-7) contains supplementary material, which is available to authorized users. Springer US 2019-02-16 2019 /pmc/articles/PMC6486948/ /pubmed/30778661 http://dx.doi.org/10.1007/s00408-019-00206-7 Text en © The Author(s) 2019, corrected publication 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. |
spellingShingle | Interstitial Lung Disease Voortman, M. Hendriks, C. M. R. Elfferich, M. D. P. Bonella, F. Møller, J. De Vries, J. Costabel, U. Drent, M. The Burden of Sarcoidosis Symptoms from a Patient Perspective |
title | The Burden of Sarcoidosis Symptoms from a Patient Perspective |
title_full | The Burden of Sarcoidosis Symptoms from a Patient Perspective |
title_fullStr | The Burden of Sarcoidosis Symptoms from a Patient Perspective |
title_full_unstemmed | The Burden of Sarcoidosis Symptoms from a Patient Perspective |
title_short | The Burden of Sarcoidosis Symptoms from a Patient Perspective |
title_sort | burden of sarcoidosis symptoms from a patient perspective |
topic | Interstitial Lung Disease |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6486948/ https://www.ncbi.nlm.nih.gov/pubmed/30778661 http://dx.doi.org/10.1007/s00408-019-00206-7 |
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