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Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study
OBJECTIVE: Among the most significant challenges in SLE are the excessive diagnosis delay and the lack of coordinated care. The aim of the study was to investigate patient pathways in SLE in order to improve clinical and organisational challenges in the management of those with suspected and confirm...
Autores principales: | , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9109107/ https://www.ncbi.nlm.nih.gov/pubmed/35568439 http://dx.doi.org/10.1136/lupus-2022-000700 |
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author | Schlencker, Aurelien Messer, Laurent Ardizzone, Marc Blaison, Gilles Hinschberger, Olivier Dahan, Etienne Sordet, Christelle Walther, Julia Dory, Anne Gonzalez, Maria Kleinlogel, Stéphanie Bramont-Nachman, Aurélia Barrand, Lionel Payen-Revol, Isabelle Sibilia, Jean Martin, Thierry Arnaud, Laurent |
author_facet | Schlencker, Aurelien Messer, Laurent Ardizzone, Marc Blaison, Gilles Hinschberger, Olivier Dahan, Etienne Sordet, Christelle Walther, Julia Dory, Anne Gonzalez, Maria Kleinlogel, Stéphanie Bramont-Nachman, Aurélia Barrand, Lionel Payen-Revol, Isabelle Sibilia, Jean Martin, Thierry Arnaud, Laurent |
author_sort | Schlencker, Aurelien |
collection | PubMed |
description | OBJECTIVE: Among the most significant challenges in SLE are the excessive diagnosis delay and the lack of coordinated care. The aim of the study was to investigate patient pathways in SLE in order to improve clinical and organisational challenges in the management of those with suspected and confirmed SLE. METHODS: We conducted a cross-sectional study of patients with SLE, healthcare providers and other representative stakeholders. Focus groups were conducted, and based on the collected data the most impactful disruption points in SLE patient pathways were identified. A novel framework to improve individual patient pathways in SLE was developed, discussed and validated during a consensus meeting with representative stakeholders. RESULTS: Six thematic clusters regarding disruption in optimal patient pathways in SLE were identified: appropriate and timely referral strategy for SLE diagnosis; the need for a dedicated consultation during which the diagnosis of SLE would be announced, and following which clarifications and psychological support offered; individualised patient pathways with coordinated care based on organ involvement, disease severity and patient preference; improved therapeutic patient education; prevention of complications such as infections, osteoporosis and cancer; and additional patient support. During the consensus meeting, the broader panel of stakeholders achieved consensus on these attributes and a framework for optimising SLE patient pathways was developed. CONCLUSIONS: We have identified significant disruption points and developed a novel conceptual framework to improve individual patient pathways in SLE. These data may be of valuable interest to patients with SLE, their physicians, health organisations as well as policy makers. |
format | Online Article Text |
id | pubmed-9109107 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-91091072022-05-27 Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study Schlencker, Aurelien Messer, Laurent Ardizzone, Marc Blaison, Gilles Hinschberger, Olivier Dahan, Etienne Sordet, Christelle Walther, Julia Dory, Anne Gonzalez, Maria Kleinlogel, Stéphanie Bramont-Nachman, Aurélia Barrand, Lionel Payen-Revol, Isabelle Sibilia, Jean Martin, Thierry Arnaud, Laurent Lupus Sci Med Epidemiology and Outcomes OBJECTIVE: Among the most significant challenges in SLE are the excessive diagnosis delay and the lack of coordinated care. The aim of the study was to investigate patient pathways in SLE in order to improve clinical and organisational challenges in the management of those with suspected and confirmed SLE. METHODS: We conducted a cross-sectional study of patients with SLE, healthcare providers and other representative stakeholders. Focus groups were conducted, and based on the collected data the most impactful disruption points in SLE patient pathways were identified. A novel framework to improve individual patient pathways in SLE was developed, discussed and validated during a consensus meeting with representative stakeholders. RESULTS: Six thematic clusters regarding disruption in optimal patient pathways in SLE were identified: appropriate and timely referral strategy for SLE diagnosis; the need for a dedicated consultation during which the diagnosis of SLE would be announced, and following which clarifications and psychological support offered; individualised patient pathways with coordinated care based on organ involvement, disease severity and patient preference; improved therapeutic patient education; prevention of complications such as infections, osteoporosis and cancer; and additional patient support. During the consensus meeting, the broader panel of stakeholders achieved consensus on these attributes and a framework for optimising SLE patient pathways was developed. CONCLUSIONS: We have identified significant disruption points and developed a novel conceptual framework to improve individual patient pathways in SLE. These data may be of valuable interest to patients with SLE, their physicians, health organisations as well as policy makers. BMJ Publishing Group 2022-05-12 /pmc/articles/PMC9109107/ /pubmed/35568439 http://dx.doi.org/10.1136/lupus-2022-000700 Text en © Author(s) (or their employer(s)) 2022. 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 Schlencker, Aurelien Messer, Laurent Ardizzone, Marc Blaison, Gilles Hinschberger, Olivier Dahan, Etienne Sordet, Christelle Walther, Julia Dory, Anne Gonzalez, Maria Kleinlogel, Stéphanie Bramont-Nachman, Aurélia Barrand, Lionel Payen-Revol, Isabelle Sibilia, Jean Martin, Thierry Arnaud, Laurent Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study |
title | Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study |
title_full | Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study |
title_fullStr | Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study |
title_full_unstemmed | Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study |
title_short | Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study |
title_sort | improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study |
topic | Epidemiology and Outcomes |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9109107/ https://www.ncbi.nlm.nih.gov/pubmed/35568439 http://dx.doi.org/10.1136/lupus-2022-000700 |
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