Guideline adherence in the management of lupus: Key challenges and potential solutions

During the Lupus Hub Steering Committee (SC) Meeting held on June 19, 2025, key opinion leaders convened to discuss the key challenges associated with implementing guidelines for systemic lupus erythematosus (SLE) and lupus nephritis (LN) in clinical practice, as well as potential solutions. The meeting commenced with a presentation by the Lupus Hub SC Chair Ricard Cervera, who provided an overview of the key international guidelines, including the 2023 EULAR recommendations for SLE and LN, the 2024 ACR guidelines for LN, the 2025 ACR guidelines for SLE, the 2024 KDIGO guidelines for LN, and the 2023 EULAR guidelines for non-pharmacological management of SLE, and the need for a multidisciplinary approach to implement the guidelines in practice. The discussion featured other SC members (rheumatologists and immunologists), including Betty Diamond, Gaurav Gulati, Ioannis Parodis, Jill Buyon, Laurent Arnaud, and Manuel Francisco Ugarte-Gil, and four invited guest speakers – David D’Cruz (rheumatologist and thrombosis expert), David Jayne (nephrologist), Nathalie Costedoat-Chalumeau (autoimmune disease expert), and Onno Teng (nephrologist). Together, this multidisciplinary panel explored key barriers to the clinical implementation of guidelines and practical strategies to improve guideline adherence in routine settings. 

Key learnings

Key challenges with guideline adherence (Figure 1)

• Short consultation times can make the delivery of comprehensive care difficult, including diagnostics, treatment planning, and patient education on holistic aspects such as photoprotection and fatigue management.
• Regulatory drug approval alone does not guarantee availability, affordability, and accessibility, for example:
  • In regions such as Latin America, limited access to other medications often contributes to over-reliance on corticosteroids.
  • Even in developed countries such as the UK, high cost of certain drugs restricts access. For instance, anifrolumab was deemed not cost-effective by the National Institute for Health and Care Excellence (NICE).
  • Government policies can prioritize cheaper drugs over the most appropriate ones (e.g. in Sweden).
  • The high cost of drugs, even in high income countries such as the US, strain healthcare systems, often leading to reallocation of resources and increased burden on patients through higher premiums or public healthcare expenses, making the implementation of newer biologic-based recommendations difficult.
• Poor medication adherence is a persistent issue, with current guidelines offering limited strategies to address the root causes, including insufficient emphasis on patient education.
• Existing guidelines are overly theoretical, emphasizing new therapies while insufficiently addressing practical challenges such as medication adherence and therapeutic measuring of drug levels.
• Current guidelines lack clear explanation of “optimal care” for patients with lupus, limiting their practical applicability in clinical settings. 

Potential solutions (Figure 2)

• Multidisciplinary collaboration with effective communication between care delivery teams and specialist medical teams is essential.
  • Specialist nurses, who typically spend more time with patients, play a vital role in monitoring adherence.
• To highlight that adherence is a shared responsibility, clinicians should clearly explain to patients the purpose of each medication, its importance or priority within the treatment plan, potential adverse events, and when to seek medical attention.
• To improve treatment access, healthcare providers should prioritize the inclusion of key medications on formularies and streamline pre-authorization processes, while also defining optimal care standards and advocating appropriate reimbursement through engagement with health authorities.
• Integrating digital tools and artificial intelligence into healthcare systems could address challenges not easily managed in standard consultations by assessing patient knowledge, monitoring adherence, tracking symptoms (e.g. fatigue), and identifying non-adherence patterns. These technologies can enhance patient engagement and empower shared decision-making.

This independent educational activity is supported by AstraZeneca. All content was developed independently. The funder was allowed no influence on the content of this activity.