Elevating the Standard of Care for Patients with Axial Spondyloarthritis: ‘Calls to Action’ from Rheumacensus, a Multistakeholder Pan-European Initiative

• Published in: Rheumatology and therapy. Vol. 11; no. 3; pp. 773 - 794
• Main Authors: Phoka, Andri, van den Bemt, Bart J. F., Lubrano, Ennio, Singh, Inderjit, Fernández-Carballido, Cristina, Parow, Detlev, Webb, Dale, Lacombe, Fabienne, Harrington, Laura, Baraliakos, Xenofon
• Format: Journal Article
• Language: English
• Published: Cheshire Springer Healthcare 01.06.2024; Springer Nature B.V; Adis, Springer Healthcare
• Subjects: Axial spondyloarthritis; Consensus; Delphi method; Empowerment; European; Family Medicine; General Practice; Internal Medicine; Medical personnel; Medicine; Medicine & Public Health; Multistakeholder; Original Research; Orthopedics; Patient-centric care; Patients; Quality of Life Research; Rheumatology; Standard of care; Europe; Axial spondyloarthritis; Multistakeholder; European; Standard of care; Patient-centric care; Consensus
• ISSN: 2198-6576; 2198-6584
• DOI: 10.1007/s40744-024-00663-4

Introduction Several barriers to optimal care in axial spondyloarthritis (axSpA) exist, which is detrimental to patient outcomes. The Rheumacensus programme aimed to identify how the standard of care (SoC) and treatment ambition for patients with axSpA could be elevated, from the unique perspective of three key stakeholders from across Europe: patients, healthcare professionals (HCPs) and payors. Methods Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in axSpA and an area of focus, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting to generate ‘Calls to Action’ (CTA) to highlight the changes needed to elevate the SoC for patients with axSpA. Results The Rheumacensus CC consisted of four patient representatives, four HCPs and four payors. All 12 members completed all three Delphi e-consultations. The shared area of focus that informed the Delphi process was patient empowerment through education on the disease and treatment options available, to enable patient involvement in management and ultimately increase treatment adherence. Four key themes emerged from the Delphi process: patient empowerment, patient knowledge, patient–HCP consultations and optimal initial treatment. These themes informed 11 overarching CTA, which demonstrate the need for a multistakeholder approach to implement a paradigm shift towards patient-centred care to elevate health outcomes in patients with axSpA. Conclusion Rheumacensus identified CTA to help bridge the disparities observed in axSpA care. It is now imperative for all stakeholders to take practical steps towards addressing these CTA to elevate the SoC and treatment ambition in patients with axSpA. Plain Language Summary Axial spondyloarthritis (axSpA) is a long-term inflammatory disease involving the spine and other joints of the body as well as where tendons and ligaments attach to bone. AxSpA is associated with a significant burden to patients which can be worsened by delays in diagnosis and poor disease management. This report is about a programme called Rheumacensus which has the overall aim of improving the standard of care (SoC) for patients with axSpA. Rheumacensus brings together the points of view of three key groups involved in the care of people with axSpA: patients, payors and healthcare professionals (HCPs) from across Europe. Together, these three groups agreed to focus on patient empowerment through education on the disease and treatment options to effectively enhance treatment adherence, as a way to raise the SoC. Through a series of exercises—to agree on the current SoC and what needs to be improved—and group discussions, four themes were established which were used by the groups to help them suggest ‘Calls to action’ (CTA). The CTAs were ideas of how improvements could be made or what needs to be done to improve the care patients receive. The four themes were (1) patient empowerment, (2) patient knowledge, (3) patient–HCP consultation and (4) optimal initial treatment. In total, 11 CTAs were developed across these themes that provide direction and practical next steps which patients, payors and HCPs could take to drive change and make a real difference to patients by improving their care.