Driving change that makes a real difference to patients with axSpA and PsA

Our commitment to rheumatology

Chronic inflammatory conditions such as axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA) can have a devastating impact on patients if not managed appropriately.1,2 Affecting between 0.03% to 1.8% of the population across Europe,3 these two conditions form part of the spondyloarthritis spectrum, with axSpA mainly affecting the axial skeleton (spine), and PsA – associated with psoriasis – mainly affecting peripheral joints in the fingers and toes.4

Click here to learn more about axSpA

Patients and healthcare professionals face many challenges when it comes to managing these conditions. From delayed diagnosis to fragmented care, these challenges can have a severe effect on a patient’s quality of life, impacting both their physical and mental health.1,2 

This is why UCB has launched the RHEUMACENSUS programme. 

RHEUMACENSUS: An overview

Rheumacensus is a pan-European initiative designed to address important challenges in the current care pathways of axSpA and PsA. The programme aimed to:

  1. Gather perspectives from three different stakeholder groups involved in patient care, to identify the challenges faced by patients
  2. Use a robust consensus-based approach to develop clear calls to action to overcome these challenges
  3. Brainstorm potential activities ultimately aimed at raising the standard of care for patients

How does it work?

Two ‘Consensus Councils’ – one for axSpA and one for PsA – were formed. Each had twelve members made up of patient representatives, payors and healthcare professionals. The panel participated in a virtual workshop and followed a multi-round Delphi process to pinpoint the current care challenges.
 

 

The key shared areas of focus across both diseases were

PsA
“Patient empowerment through education on the disease and treatment options available, to enable patient involvement in disease management”

axSpA
“Patient empowerment through education on the disease and treatment options available, to enable patient involvement in disease management and ultimately increase treatment adherence”
 

A set of calls to action was defined and formed for each stakeholder group (patient representative, healthcare professional or payor) as well as overarching actions for all.

These calls to action pave the way for tangible steps that can be taken to create real and meaningful change to the standard of care for patients with axSpA and PsA. For example, there was a recognised need to forge and strengthen collaborations between healthcare professionals and patient advocacy groups to help patients access high quality, reliable information.

The results

The critical recommendations from the two Consensus Councils have been published in Rheumatology and Therapy as twinned articles. See the full article by clicking on the links below:

What is to come?

The success of the publications is only the beginning. We are now working to address our calls to action through a suite of medical educational tactics.

We want to amplify the patient voice and make a real difference, to help them experience improved outcomes and quality of care. We are currently collaborating with various stakeholder groups to create materials highly relevant to the needs of patients and healthcare professionals.

Ultimately, we are on a journey to elevate the standard of care for patients with axSpA and PsA – and we look forward to keeping you updated!

Click here to access the RHEUMACENSUS programme infographic.

References
  1. Verbinnen I, et al. Rheumatol Ther. 2024;795-815.
  2. Phoka A, et al. Rheumatol Ther. 2024;773-94.
  3. Torre-Alonso JC, et al. Patient Prefer Adherence. 2018;8(12):733–47. 
  4. Benavent D, et al. Ther Adv Musculoskelet Dis. 2020;16:12:1759720X20971889.