Rheumatology and Therapy (Apr 2024)

Elevating the Standard of Care for Patients with Psoriatic Arthritis: ‘Calls to Action’ from a Multistakeholder Pan-European Initiative

  • Iris Verbinnen,
  • Emilio Monte-Boquet,
  • Detlev Parow,
  • Fabienne Lacombe,
  • Andrew Pothecary,
  • Arno W. R. van Kuijk,
  • Laura Harrington,
  • Edita Müllerová,
  • Andreas Pinter,
  • Ulrike Erstling,
  • Andrea Tomasini,
  • Philip S. Helliwell

DOI
https://doi.org/10.1007/s40744-024-00664-3
Journal volume & issue
Vol. 11, no. 3
pp. 795 – 815

Abstract

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Abstract Introduction Psoriatic arthritis (PsA) is a complex, progressive, and often debilitating disease. Despite recent advances in treatment, numerous unmet needs in patient care persist. Rheumacensus is a multistakeholder, pan-European initiative designed to identify ways to elevate the standard of care (SoC) and treatment ambition for patients with PsA, using the perspectives of three key stakeholder groups: patients, healthcare professionals (HCPs) and payors. Methods Rheumacensus followed three phases: an insights-gathering workshop to identify current unmet needs in PsA and an area of focus for the project, a modified Delphi process to gain consensus on improvements within the agreed area of focus, and a Consensus Council (CC) meeting which used consensus statements as inspiration to generate ‘Calls to Action’ (CTA)—practical measures which, if implemented, could elevate the SoC for patients with PsA. 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”. Four key themes emerged from the Delphi process: patient empowerment, patient knowledge and sources of education, patient–HCP consultations, and optimal initial treatment. Statements within these themes informed 12 overarching CTA, which focus on the need for a multistakeholder approach to implementing a paradigm shift towards patient-centred care and improved outcomes for patients with PsA. Conclusion Rheumacensus has identified shortcomings in the current SoC for patients with PsA and provides a foundation for change through practical CTA. It is hoped that all stakeholders will now take practical steps towards implementing these CTA across Europe to elevate the SoC for patients with PsA.

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