Abstract
A patient pathway is the patient experience from the first symptom through the initial referral for diagnosis, treatment and follow-up, and includes diverse aspects of disease management, such as holistic support and prevention of complications. Among the most significant challenges in systemic lupus erythematosus (SLE) 1 are the excessive diagnosis delay and the lack of coordinated care. At our national reference center in Strasbourg (France), we have conducted a series of focus groups with healthcare professionals and SLE patients. Based on the collected data, the most impactful disruption points in SLE patient pathways were identified.2 A novel framework to improve individual patient pathways in SLE was developed, discussed and validated during a consensus meeting with representative stakeholders. Six main disruptions in optimal SLE patient pathways were identified: (1) appropriate and timely referral strategy for SLE diagnosis; (2) the need for a dedicated consultation during which the diagnosis of SLE would be communicated, and following which clarifications and psychological support offered; (3) individualized patient pathways with coordinated care based on organ involvement, disease severity and patient preference; (4) improved therapeutic patient education; (5) prevention of complications such as infections, osteoporosis and cancer; (6) and additional patient support. These disruption points are valuable knowledge, which may be used to improve individual patient pathways in SLE. These data may be of valuable interest to patients with SLE, their physicians, health organizations and policy makers.
References
Felten R, et al. 10 most important contemporary challenges in the management of SLE. Lupus Sci Med. 2019 Jan 10;6(1):e000303. doi: 10.1136/lupus-2018-000303.
Schlencker A, et al. Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study. Lupus Sci Med. 2022 May;9(1):e000700. doi: 10.1136/lupus-2022-000700.
Learning Objectives
Explain the key concept of patient pathways
Describe how patient pathways can be mapped in systemic lupus
Identify the main disruption points in lupus patient pathways
Describe how to improve lupus patient pathways
