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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...

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Autores principales: Voortman, M., Hendriks, C. M. R., Elfferich, M. D. P., Bonella, F., Møller, J., De Vries, J., Costabel, U., Drent, M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer US 2019
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.
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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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