Aurelien Schlencker, Laurent Messer, Marc Ardizzone, Gilles Blaison, Olivier Hinschberger, Etienne Dahan, Christelle Sordet, Julia Walther, Anne Dory, Maria Gonzalez, Stéphanie Kleinlogel, Aurélia Bramont-Nachman, Lionel Barrand, Isabelle Payen-Revol, Jean Sibilia, Thierry Martin, Laurent Arnaud
Abstract
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.
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.
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.
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.
Pharmacology, Toxicology and Pharmaceutical Science
3
12%
Arts and Humanities
1
4%
Business, Management and Accounting
1
4%
Biochemistry, Genetics and Molecular Biology
1
4%
Other
2
8%
Unknown
10
40%
Attention Score in Context
Attention Score in Context
This research output has an Altmetric Attention Score of 126. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 24 May 2024.
All research outputs
#353,442
of 26,557,556 outputs
Outputs from Lupus Science & Medicine
#11
of 492 outputs
Outputs of similar age
#9,541
of 451,601 outputs
Outputs of similar age from Lupus Science & Medicine
#1
of 19 outputs
Altmetric has tracked 26,557,556 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 98th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 492 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 13.5. This one has done particularly well, scoring higher than 97% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 451,601 tracked outputs that were published within six weeks on either side of this one in any source. This one has done particularly well, scoring higher than 97% of its contemporaries.
We're also able to compare this research output to 19 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 94% of its contemporaries.
