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Published in: Rheumatology and Therapy 3/2024

Open Access 25-04-2024 | Spondyloarthropathy | Original Research

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

Authors: Andri Phoka, Bart J. F. van den Bemt, Ennio Lubrano, Inderjit Singh, Cristina Fernández-Carballido, Detlev Parow, Dale Webb, Fabienne Lacombe, Laura Harrington, Xenofon Baraliakos

Published in: Rheumatology and Therapy | Issue 3/2024

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Abstract

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.
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Metadata
Title
Elevating the Standard of Care for Patients with Axial Spondyloarthritis: ‘Calls to Action’ from Rheumacensus, a Multistakeholder Pan-European Initiative
Authors
Andri Phoka
Bart J. F. van den Bemt
Ennio Lubrano
Inderjit Singh
Cristina Fernández-Carballido
Detlev Parow
Dale Webb
Fabienne Lacombe
Laura Harrington
Xenofon Baraliakos
Publication date
25-04-2024
Publisher
Springer Healthcare
Published in
Rheumatology and Therapy / Issue 3/2024
Print ISSN: 2198-6576
Electronic ISSN: 2198-6584
DOI
https://doi.org/10.1007/s40744-024-00663-4

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