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Living with systemic lupus erythematosus in 2020: a European patient survey

OBJECTIVE: The aim of this study was to analyse the 2020 burden of Systemic Lupus Erythematosus (SLE) in Europe, from the patients’ perspective. METHODS: In May 2020, Lupus Europe, the European umbrella patient association for SLE, designed and disseminated a multilingual anonymous online survey to...

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Autores principales: Cornet, Alain, Andersen, Jeanette, Myllys, Kirsi, Edwards, Angela, Arnaud, Laurent
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8051432/
https://www.ncbi.nlm.nih.gov/pubmed/33849920
http://dx.doi.org/10.1136/lupus-2020-000469
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author Cornet, Alain
Andersen, Jeanette
Myllys, Kirsi
Edwards, Angela
Arnaud, Laurent
author_facet Cornet, Alain
Andersen, Jeanette
Myllys, Kirsi
Edwards, Angela
Arnaud, Laurent
author_sort Cornet, Alain
collection PubMed
description OBJECTIVE: The aim of this study was to analyse the 2020 burden of Systemic Lupus Erythematosus (SLE) in Europe, from the patients’ perspective. METHODS: In May 2020, Lupus Europe, the European umbrella patient association for SLE, designed and disseminated a multilingual anonymous online survey to individuals with a self-reported physician’s diagnosis of SLE living in Europe. RESULTS: Data from 4375 SLE survey respondents (95.9% women, median age: 45 (IQR: 36–54) years, 70.7% Caucasians) from 35 European countries were analysed. The median age at SLE diagnosis was 30 years (IQR: 22–40) and the median diagnosis delay was 2 years (IQR: 0–6). The most commonly affected organ-systems included the joints (81.8%) and skin (59.4%), with renal involvement in 30%. Another diagnosis was given before that of SLE in 45.0%, including psychological/mental disorders in 9.1% and fibromyalgia in 5.9%. The median number of symptoms reported was 9 (IQR: 6–11) out of 21, with fatigue most common (85.3%) and most bothersome. The median number of SLE-related medications was 5 (IQR: 3–7), including antimalarials (75%), oral glucocorticoids (52.4%), immunosuppressants (39.8%) and biologics (10.9%). Respondents reported significant impact over their studies, career and emotional/sexual life in 50.7%, 57.9% and 38.2%, respectively. Appropriate access to care was highly variable across countries and care component. CONCLUSION: This survey underlines the 2020 burden and strong heterogeneity in the care of SLE across Europe, from the patient’s perspective. Altogether, these data may prove crucial to physicians, patients and policy-makers to improve the diagnosis and management of this rare and complex disease.
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spelling pubmed-80514322021-04-26 Living with systemic lupus erythematosus in 2020: a European patient survey Cornet, Alain Andersen, Jeanette Myllys, Kirsi Edwards, Angela Arnaud, Laurent Lupus Sci Med Epidemiology and Outcomes OBJECTIVE: The aim of this study was to analyse the 2020 burden of Systemic Lupus Erythematosus (SLE) in Europe, from the patients’ perspective. METHODS: In May 2020, Lupus Europe, the European umbrella patient association for SLE, designed and disseminated a multilingual anonymous online survey to individuals with a self-reported physician’s diagnosis of SLE living in Europe. RESULTS: Data from 4375 SLE survey respondents (95.9% women, median age: 45 (IQR: 36–54) years, 70.7% Caucasians) from 35 European countries were analysed. The median age at SLE diagnosis was 30 years (IQR: 22–40) and the median diagnosis delay was 2 years (IQR: 0–6). The most commonly affected organ-systems included the joints (81.8%) and skin (59.4%), with renal involvement in 30%. Another diagnosis was given before that of SLE in 45.0%, including psychological/mental disorders in 9.1% and fibromyalgia in 5.9%. The median number of symptoms reported was 9 (IQR: 6–11) out of 21, with fatigue most common (85.3%) and most bothersome. The median number of SLE-related medications was 5 (IQR: 3–7), including antimalarials (75%), oral glucocorticoids (52.4%), immunosuppressants (39.8%) and biologics (10.9%). Respondents reported significant impact over their studies, career and emotional/sexual life in 50.7%, 57.9% and 38.2%, respectively. Appropriate access to care was highly variable across countries and care component. CONCLUSION: This survey underlines the 2020 burden and strong heterogeneity in the care of SLE across Europe, from the patient’s perspective. Altogether, these data may prove crucial to physicians, patients and policy-makers to improve the diagnosis and management of this rare and complex disease. BMJ Publishing Group 2021-04-13 /pmc/articles/PMC8051432/ /pubmed/33849920 http://dx.doi.org/10.1136/lupus-2020-000469 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/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/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Epidemiology and Outcomes
Cornet, Alain
Andersen, Jeanette
Myllys, Kirsi
Edwards, Angela
Arnaud, Laurent
Living with systemic lupus erythematosus in 2020: a European patient survey
title Living with systemic lupus erythematosus in 2020: a European patient survey
title_full Living with systemic lupus erythematosus in 2020: a European patient survey
title_fullStr Living with systemic lupus erythematosus in 2020: a European patient survey
title_full_unstemmed Living with systemic lupus erythematosus in 2020: a European patient survey
title_short Living with systemic lupus erythematosus in 2020: a European patient survey
title_sort living with systemic lupus erythematosus in 2020: a european patient survey
topic Epidemiology and Outcomes
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8051432/
https://www.ncbi.nlm.nih.gov/pubmed/33849920
http://dx.doi.org/10.1136/lupus-2020-000469
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