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Lupus spectrum ambiguity has long-term negative implications for patients

Lupus is a complex disease that is often difficult to diagnose. Risks of diagnostic delays include non-specific signs and symptoms that mimic other diseases and a lack of diagnostic criteria and referral pathways for non-specialists. To address these issues, we convened a series of virtual meetings...

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Autores principales: Bruce, Ian N, Buie, Joy, Bloch, Lauren, Bae, Sang-Cheol, Costenbader, Karen, Levy, Roger A, Werth, Victoria P, Marion, Ashley, Sangodkar, Sanjyot, Manzi, Susan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9835935/
https://www.ncbi.nlm.nih.gov/pubmed/37534513
http://dx.doi.org/10.1136/lupus-2022-000856
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author Bruce, Ian N
Buie, Joy
Bloch, Lauren
Bae, Sang-Cheol
Costenbader, Karen
Levy, Roger A
Werth, Victoria P
Marion, Ashley
Sangodkar, Sanjyot
Manzi, Susan
author_facet Bruce, Ian N
Buie, Joy
Bloch, Lauren
Bae, Sang-Cheol
Costenbader, Karen
Levy, Roger A
Werth, Victoria P
Marion, Ashley
Sangodkar, Sanjyot
Manzi, Susan
author_sort Bruce, Ian N
collection PubMed
description Lupus is a complex disease that is often difficult to diagnose. Risks of diagnostic delays include non-specific signs and symptoms that mimic other diseases and a lack of diagnostic criteria and referral pathways for non-specialists. To address these issues, we convened a series of virtual meetings with members of our Addressing Lupus Pillars for Health Advancement clinical care team. Meeting participants included lupus physicians, treatment developers from biotechnology, patient advocacy group representatives from the Lupus Foundation of America and advocacy/government consultants. Causes and consequences of ambiguity in diagnosis and diagnostic delays were evaluated through historical, experiential and evidence-based accounts (survey data, literature reviews and patient testimonials). Discussions highlighted the need for a clearer understanding of the definition of lupus, the natural history of the disease and the need for advancements in biotechnology to support an accurate and timely diagnosis with the potential development of a lupus spectrum.
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spelling pubmed-98359352023-01-13 Lupus spectrum ambiguity has long-term negative implications for patients Bruce, Ian N Buie, Joy Bloch, Lauren Bae, Sang-Cheol Costenbader, Karen Levy, Roger A Werth, Victoria P Marion, Ashley Sangodkar, Sanjyot Manzi, Susan Lupus Sci Med Meeting Report Lupus is a complex disease that is often difficult to diagnose. Risks of diagnostic delays include non-specific signs and symptoms that mimic other diseases and a lack of diagnostic criteria and referral pathways for non-specialists. To address these issues, we convened a series of virtual meetings with members of our Addressing Lupus Pillars for Health Advancement clinical care team. Meeting participants included lupus physicians, treatment developers from biotechnology, patient advocacy group representatives from the Lupus Foundation of America and advocacy/government consultants. Causes and consequences of ambiguity in diagnosis and diagnostic delays were evaluated through historical, experiential and evidence-based accounts (survey data, literature reviews and patient testimonials). Discussions highlighted the need for a clearer understanding of the definition of lupus, the natural history of the disease and the need for advancements in biotechnology to support an accurate and timely diagnosis with the potential development of a lupus spectrum. BMJ Publishing Group 2023-01-11 /pmc/articles/PMC9835935/ /pubmed/37534513 http://dx.doi.org/10.1136/lupus-2022-000856 Text en © Author(s) (or their employer(s)) 2023. 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 Meeting Report
Bruce, Ian N
Buie, Joy
Bloch, Lauren
Bae, Sang-Cheol
Costenbader, Karen
Levy, Roger A
Werth, Victoria P
Marion, Ashley
Sangodkar, Sanjyot
Manzi, Susan
Lupus spectrum ambiguity has long-term negative implications for patients
title Lupus spectrum ambiguity has long-term negative implications for patients
title_full Lupus spectrum ambiguity has long-term negative implications for patients
title_fullStr Lupus spectrum ambiguity has long-term negative implications for patients
title_full_unstemmed Lupus spectrum ambiguity has long-term negative implications for patients
title_short Lupus spectrum ambiguity has long-term negative implications for patients
title_sort lupus spectrum ambiguity has long-term negative implications for patients
topic Meeting Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9835935/
https://www.ncbi.nlm.nih.gov/pubmed/37534513
http://dx.doi.org/10.1136/lupus-2022-000856
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