Across Europe, millions of people live with axial spondyloarthritis (axSpA) and hundreds of thousands live with psoriatic arthritis (PsA).

These chronic inflammatory diseases cause stiffness, pain and swelling in the spine and peripheral joints, and can lead to loss of mobility and structural joint damage if untreated. Despite the need for rapid access to optimal management, the patient journey is fraught with challenges, from diagnostic delays to step-up treatment algorithms and a lack of collaboration between multidisciplinary teams. It is clear that the standard of care for patients with axSpA and PsA requires improvement, but where do we start?

Since April 2022, UCB has sponsored an ongoing programme named ‘Rheumacensus’ to elevate the standard of rheumatology care. The programme itself is driven by a 24-strong multistakeholder Consensus Council, consisting of eight healthcare professionals (HCP), eight payers and eight patient representatives from across Europe. Bringing these key stakeholders together to achieve a shared goal provides a unique opportunity for collaboration, and a forum to share and understand each other’s perspectives on the unmet needs and potential improvements required for axSpA/PsA care.

The name ‘Rheumacensus’ aptly captures the aim of the programme: to reach consensus on the current challenges in axSpA and PsA management and what is needed to elevate the standard of care to ultimately improve patient outcomes.

To achieve this goal, a three-step process was undertaken: to identify the unmet needs and area of focus for the programme; reach consensus on the required improvements to care, and generate achievable calls to action to drive tangible change.

1. Identifying the unmet needs in axSpA and PsA care to generate an area of focus
After assembling the Consensus Council, the stakeholders were split into two groups (axSpA or PsA) to reflect their area of expertise. The Rheumacensus programme then kicked off with a meeting involving one HCP, one payer and one patient representative from each group. This meeting generated valuable insights into the existing and persisting unmet needs in axSpA and PsA care from each stakeholders’ perspective.  Analysis of the unmet needs revealed a common theme of sub-optimal patient-centred care in both the axSpA and PsA groups, highlighting a widespread pitfall across rheumatology care. This finding informed the area of focus for the programme: Patient empowerment through education on the disease and treatment options available to enable patient involvement in management (and for axSpA, the addition of: and ultimately increase treatment adherence).

2. Reaching consensus on the required improvements to axSpA and PsA care
The area of focus provided a basis to develop statements for Delphi e-consultation forms, which were digitally distributed to all 24 members of the Consensus Council. The statements aimed to gain consensus on the current standard of care and also the desired state.

Over three subsequent rounds, 132 statements overall (63 for axSpA and 69 for PsA) reached consensus, providing extremely valuable first-hand insights into axSpA and PsA care from key stakeholders across Europe.

After analysis, the Delphi statements that reached consensus were grouped into four key areas of patient-centred care that require improvement: patient empowerment, patient knowledge (and for PsA: and sources of education), patient–HCP consultations and optimal initial treatment.

3. Generating achievable calls to action to drive tangible change
Presented with a range of statements achieving multistakeholder agreement, the Consensus Council discussed what each of them must do in their roles to bridge the gap between the current and desired standard of care in axSpA and PsA. Their discussions generated a compendium of achievable actions allocated to each stakeholder involved in the care of patients with axSpA and PsA. The stakeholder-specific calls to action informed overarching calls to action for each area of need, which illustrate the overall changes needed to improve the standard of care. The calls to action highlight the need for change at an individual level but also the need for a collaborative effort as each stakeholder plays an essential role in improving care.

The Rheumacensus methodology and findings have recently been published in twinned manuscripts in Rheumatology and Therapy, and dive into detail on the stakeholder-specific calls to action.

The overarching calls to action for PsA are:

Patient empowerment

• Ensure all patients receive the support they need to be empowered
• Improve the visibility of patients and patient advocacy groups (PAGs) to bolster patient support and strengthen the patient voice at an organisational level
• Support patients to understand life with a chronic condition and HCPs to communicate effectively with patients so they appreciate the patient’s lived experience

• Collaborate to develop tailored, holistic educational materials, with patient input, covering the full patient journey from diagnosis with a chronic disease through all life stages
• Direct patients to high-quality, validated, easy-to-access educational material
• Educate more broadly, beyond the patient, to improve knowledge of PsA among dermatologists and the public.

• Support HCP communication techniques, including active listening, motivational interviewing and soft skills
• Optimise patient involvement in shared decision-making
• Develop and utilise new and existing tools to better prepare patients for consultations.

• Improve collaboration and engagement of payers with patients and patient organisations to augment a reciprocal understanding of each other’s role and perspectives
• Personalise treatment by utilising assessment tools to monitor patient treatment journey and response
• Adopt data, tools and algorithms to better understand drug comparisons and optimal treatment.

• Make patients aware of their role and rights in their care and support them to voice their experience, ask questions and state their treatment goals
• Audit currently available patient empowerment measures and tailor these to individual patient needs before implementation in the clinic.

• Provide patients with bite-sized, interactive, educational resources, tailored to their individual needs, on any aspect of living with axSpA that interests them (including clinical, holistic and health economic topics)

‘The aim of the programme is to reach consensus on the current challenges in axSpA and PsA management and what is needed to elevate the standard of care to ultimately improve patient outcomes’

Paul Atherfold is European Medical Education Strategy Lead at UCB Pharma