FormalPara Key Summary Points

Several barriers to best practice care in axial spondyloarthritis (axSpA) exist, preventing patients from achieving optimal outcomes. Rheumacensus is a multidisciplinary, pan-European initiative involving 12 stakeholders evenly representing three key stakeholder groups: patients, healthcare professionals (HCPs) and payors.

Stakeholder leads identified a shared area of focus which informed the rest of the programme: patient empowerment through education on the disease and treatment options available, to enable patient involvement in management and ultimately increase treatment adherence.

A modified Delphi process was used to gain multistakeholder consensus on statements based on insights around the shared area of focus, giving rise to four areas of management requiring improvement (themes): patient empowerment, patient knowledge, patient–HCP consultations and optimal initial treatment.

Consensus statements were used to inspire ‘Calls to Action’ per theme, designed to bridge the gap between the current and desired care which, if implemented, would contribute to an elevation in the standard of care for patients with axSpA.

The key areas of action that require change in axSpA care focused on many aspects of patient empowerment, including the need for effective communication, collaboration and education between stakeholders, as well as increased awareness of patient rights, personalised care and treatment access.

Introduction

Axial spondyloarthritis (axSpA) is a complex chronic inflammatory disease that affects the axial skeleton, comprising both radiographic and non-radiographic forms [1,2,3,4,5]. Clinical manifestations include progressive back pain, morning stiffness, fatigue, functional impairment and often irreversible structural damage of the axial skeleton [1, 2]. Several barriers to optimal care exist e.g. identification and timely referral of patients with axSpA [3, 6, 7]. Lack of axSpA awareness and knowledge, coupled with the insidious onset of symptoms may contribute to these barriers [6,7,8].

In Europe, patients with axSpA experience an average diagnostic delay of 5–7 years, prolonging the initiation of optimal treatment, which is associated with high healthcare resource utilisation from many visits to healthcare professionals (HCPs) and the cost of inappropriate treatments [8,9,10,11,12]. Indirect costs related to days of absence from work can also be associated with diagnostic delay [12].

Peripheral (arthritis, enthesitis, dactylitis) and extra-musculoskeletal (uveitis, psoriasis, inflammatory bowel disease) manifestations are common in patients with axSpA as a result of shared risk factors, consequences of inflammation, or side effects of long-term axSpA treatment (e.g. non-steroidal anti-inflammatory drugs) [2, 3, 5, 13]. Many patients with axSpA have at least one comorbidity, the most common being hypertension, hyperlipidaemia and obesity [5]. The broad physical, social and psychological impact on patients with axSpA creates a cumulative burden, negatively affecting health-related quality of life (HR-QoL), work productivity, social functioning, and psychological health [1, 2, 5]. Therefore, a multidisciplinary approach is needed to optimise care, but this varies in the clinic and feasibility (e.g. human resources, administrative burden and economic cost) is not well defined [14].

Disparities exist around treatment goals of HCPs and patients, causing patients to feel unsupported and undervalued [1, 2]. However, in recent years a shift towards patient-centred care is advocating for patient involvement in shared decision-making (SDM) [5, 7, 13, 15]. Inadequate insurance coverage, lack of awareness around treatment options and limited patient education on treatment (e.g. risks and benefits) also limit care [7]. Therefore, a holistic approach between HCPs, payors and patients is essential to promote patient empowerment and elevate health outcomes [1, 2, 5, 13, 15]. Nonetheless, lack of available resources and outdated attitudes limit implementation in practice [5, 15].

The Rheumacensus programme is unique as it aims to explore different ways in which the standard of care (SoC) and treatment ambition for patients with axSpA could be elevated, from the perspective of three important stakeholders: patients, HCPs and payors. Herein, we describe this programme that was initiated to gain consensus on the current SoC in axSpA via a Delphi process, identify potential improvements and inspire ‘Calls to Action’ (CTA) to drive key stakeholders to elevate axSpA care, contributing to the long-term improvement in HR-QoL.

Methods

The Rheumacensus programme is a multistakeholder initiative combining participants from different European countries, to identify challenges in the current management of psoriatic arthritis (PsA) and axSpA and generate CTA which, if addressed, can contribute to an improvement in the overall SoC for patients with these conditions (Fig. 1). The results of the PsA workstream are published elsewhere [https://doi.org/10.1007/s40744-024-00664-3].

Fig. 1
figure 1

Process of the Rheumacensus axSpA programme. *Twelve participants were recruited and contracted; four were female and eight were male. All 12 CC participants completed all three Delphi e-consultations. †One HCP and two patient representatives were unable to attend the meeting but provided their CTA after the meeting. axSpA axial spondyloarthritis, CC Consensus Council, CTA ‘Calls to Action’, HCP healthcare professional, SoC standard of care.

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Twelve experts with a prominent level of engagement and experience in axSpA (e.g. those involved in clinical trials, authors of manuscripts on axSpA, those who treat patients with axSpA, are involved in funding axSpA medications, are a member of a patient organisation or a patient with axSpA) were recruited to participate in the axSpA Rheumacensus Consensus Council (CC) from a range of different countries across Europe. The CC consisted of three equally represented stakeholder groups: HCPs (clinicians, nurses, physiotherapists), payors and patient representatives, each with a nominated group lead (Table 1). The aim was to ensure diversity with panellists from different countries and healthcare systems and equal representation of gender as far as possible while recruiting experts with adequate experience of axSpA to contribute to the programme.

Table 1 Members of the axSpA Rheumacensus CC
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There was no need to collect any type of patient data. Hence, the approval of an ethics committee was not required. Consent was obtained from all axSpA CC members as they were contracted by UCB Pharma to take part in this programme.

A virtual stakeholder leads workshop was held in June 2022 (via Zoom) to gather insights into unmet needs in the management of axSpA from all stakeholder perspectives (Table S1). The stakeholder leads were asked in turn what unmet needs they encounter in axSpA care and what the challenges and barriers are to elevating the SoC for patients with axSpA. The unmet needs were captured, and all stakeholders discussed which unmet needs should be prioritised through Rheumacensus to make the greatest improvement to the current SoC. Discussion revealed that the common thread across the stakeholder groups that underpinned most of the identified needs was patient empowerment and the need for personalised care. The shared area of focus was refined and agreed by all the stakeholder leads—patient empowerment through education on the disease and treatment options available, to enable patient involvement in management and ultimately increase treatment adherence.

A modified Delphi method was used to explore the shared area of focus of patient empowerment from the perspective of all three stakeholders with the aim of gaining consensus across stakeholders on the current state of patient empowerment, the need for change and the desired state/action. Three rounds of Delphi e-consultations were distributed to all participants to complete anonymously via Microsoft Forms between September 2022 and January 2023. These were comprised of statements with multiple-choice answers for level of agreement (strongly agree, agree, disagree, or strongly disagree) to assess consensus (defined as more than or equal to 75% of participants selecting ‘agree’ or ‘strongly agree’), and ‘complete the sentence’ and free-text questions to gather further insights. Each successive Delphi round was refined on the basis of feedback from participants from the previous round. All 12 members of the CC took part in this process and completed all three rounds of the Delphi.

Following the Delphi e-consultations, four themes were identified: patient empowerment, patient knowledge, patient–HCP consultations and optimal initial treatment that related to different aspects of the focus area. Overarching narratives were then created, one per theme, by further distilling the statements into the insights they provided relating to the current situation, the need for change and desired state/action. This was done to summarise the outcome of the Delphi process to set the scene for the CC meeting where key consensus statements that reflected the desired state/action were used to inspire CTA. Not all statements that achieved consensus were needed in the narratives. Statements were omitted if they did not add further detail to the narrative to ensure narratives were concise. Statements were also omitted from the narratives if they specifically related to how a change should be implemented and so will be considered when the Rheumacensus programme moves into the implementation stage. The purpose of the CC meeting was to generate CTA—practical ideas that if addressed through the implementation of novel initiatives would contribute to an elevation in the SoC of patients with axSpA.

The virtual CC meeting was held via Zoom in March 2023. The meeting lasted 3.5 hours and was attended by nine of the 12 CC members. For each theme in turn, the narrative was presented, then consensus statements that described the desired SoC were used to stimulate the generation of CTA. This was done in breakout rooms to separate participants into their respective stakeholder groups (patient representatives, HCPs, payors). Participants then proposed and discussed CTA based on what they must do to address the statements presented. Then each stakeholder group presented their ideas to all the CC members so they could be discussed. Participants who were unable to attend were provided with a workmat containing an example CTA to complete and return via email to ensure their ideas were captured. Following the meeting, overarching CTA that all stakeholders could play a part in addressing were generated and agreed by the CC members (Fig. 1).

Results

Shared Area of Focus

The stakeholder leads workshop identified a shared area of focus in axSpA which informed the rest of the programme—patient empowerment through education on the disease and treatment options available, to enable patient involvement in management and ultimately increase treatment adherence. See supplementary materials (Table S1) for more information.

Participants

Participants of the axSpA CC were recruited on the basis of their expertise and experience in axSpA (Fig. 1, Table 1).

Themes and Narratives

Following the Delphi process, four key themes emerged that the consensus statements could be divided into.

1. Patient Empowerment

Discussion Points

After completion of the Delphi process, 21 statements reached consensus, of which 16 were used in the patient empowerment narrative (Tables 2, S2).

Table 2 Patient empowerment narrative
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Patient empowerment was defined as “the process by which people are supported to gain sufficient knowledge and skills, to enable them to be as actively involved as they want to be in making decisions that shape their health”. The initial definition was modified as stakeholders felt that knowledge alone was insufficient to empower patients (Table S2). An empowered patient was described as someone who can confidently discuss and proactively bring up symptoms, treatment options and concerns with their HCP. While 83% ‘agreed’ or ‘strongly agreed’ that patient empowerment plays a role in patients demanding higher treatment goals, 17% disagreed, explaining that “higher treatment goals” do not reflect patient objectives, as patients simply want to be well and so they focus on maintaining good results rather than prioritising higher goals.

Stakeholders felt the main barriers to patient empowerment are the lack of easily accessible, trustworthy information, reluctance of patients with axSpA to be involved in their care and the paternalistic approach to medicine by HCPs. Consensus was achieved for all stakeholders having a role in empowering patients with axSpA (Table 2). However, those who disagreed with a role for the pharmaceutical industry felt that HCPs had a greater role, as patients may view industry involvement to be solely based around promotion of their products, thus reducing patient confidence in decision-making. Similarly, the role of payors was challenged as a result of potential conflicting interests i.e. favouring lower costs of treatment.

Insights suggested that patient organisations offer support through educational programmes/workshops directed to all stakeholders. However, one stakeholder felt that HCPs obtain information through professional associations and so joint support is not needed. The need for reliable ways of measuring patient empowerment in axSpA reached consensus (Table 2); patient surveys could be used to understand and monitor the extent of patient involvement in disease management.

Fifty-eight percent of stakeholders recognised variations in patient empowerment with ethnicity, where some ethnicities (in particular, Asian and African) have fewer opportunities than others to engage in their care as a result of cultural and socio-economic factors. Table 3 contains the overarching CTA and associated stakeholder-specific discussions for the theme of patient empowerment. Overarching CTA were derived from the CTA specific for each stakeholder group (Tables S3, S4) which were inspired by the consensus statements marked with a superscript dagger symbol in Table 2 and generated at the CC meeting.

Table 3 Overarching CTA and associated stakeholder-specific discussions for the theme of patient empowerment
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2. Patient Knowledge

Discussion Points

Of the 15 statements that achieved consensus, 12 were used in the patient knowledge narrative as they succinctly underpinned the current situation, need for change and desired state/action (Tables 4, S5).

Table 4 Patient knowledge narrative
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Only 42% of stakeholders agreed that patients with axSpA are sufficiently knowledgeable about their disease. Further insights from the 58% who disagreed revealed that the current information available to patients with axSpA is not patient-friendly, relevant or accessible, and is not clearly understood. Moreover, all stakeholders highlighted that there is room for improvement in the level of knowledge and creating patient-friendly education tailored to their interests is important. The need to understand available treatment options in addition to disease knowledge was reflected in the revised statement, which included this, reaching 100% consensus (Table S5). All stakeholders advocated the role of exercise in axSpA management (Table 4). However, 8% disagreed that exercise plans should be adhered to as patients have the right to choose. Stakeholders recognised the need for non-judgemental, open discussions between HCPs and patients about adhering to exercise plans.

Open-ended questions about the facilitation of patient empowerment and involvement in care identified important educational topics, e.g. treatment expectations, self-evaluation, comorbidity recognition, influence of lifestyle factors and compliance to treatment plans. All stakeholders voted that patient education should be delivered through face-to-face discussions with their HCP. The use of questionnaires to assess patient knowledge was proposed, while aiming to avoid response bias (i.e. knowledgeable patients may be more likely to engage in questionnaires than those less knowledgeable). Other means of assessing patient knowledge included patient focus groups led by patient representatives and optimised use of existing tools. Alongside patient education, stakeholders felt that HCPs and payors should be educated on their interpersonal skills and the non-clinical impact of axSpA (e.g. family planning, emotional well-being, employment).

All stakeholders acknowledged the need for easily accessible, high-quality, neutral information, but recognised support may be needed to help patients understand what constitutes “high-quality” as a large amount of poor-quality information is available (e.g. social media). Fifty percent of stakeholders disagreed that patient organisations should have the main responsibility for ensuring patients have access to high-quality information (Table S5). Payors felt that patient organisations and HCPs should work together to create, provide and explain education, but that ultimate responsibility for patient education lies with HCPs as they are more informed. The revised statement specifying HCPs subsequently achieved consensus, but challenges of implementation in clinical practice were recognised e.g. HCPs lack time to adequately educate patients (Table 4). Table 5 contains the overarching CTA and associated stakeholder-specific discussions for the theme of patient knowledge. See Tables S6 and S7 in the supplementary materials for the CTA per stakeholder.

Table 5 Overarching CTA and associated stakeholder-specific discussions for the theme of patient knowledge
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3. Patient–HCP Consultations

Discussion Points

Consensus was achieved on 20 statements (Table S8), of which 12 were used within the patient–HCP consultations narrative as they succinctly underpinned the current situation, need for change and desired state/action (Table 6). One statement was also used within the optimal initial treatment narrative, as it shaped both narratives (Table 8).

Table 6 Patient–HCP consultations narrative
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The patient–HCP narrative focused on patient-centred care and identified the importance of SDM in elevating the SoC in axSpA. Initial disagreement around recognition of the full patient burden by HCPs highlighted one of many challenges faced within axSpA care. Payors felt that HCPs cannot understand the full burden as they do not experience the disease in daily life, highlighting the importance of the patient voice during consultations. Stakeholders felt that current tools do not capture the full disease burden and thus consensus was achieved that HCPs should be educated on the burden of axSpA through patient experience and that patient-reported outcome tools are required. Despite the need for patient involvement, stakeholders agreed that many patients are not aware of their potential involvement in treatment decisions (Table 6). Several stakeholders felt that this was due to the traditional, hierarchical relationship between patients and HCPs, as well as a lack of patient confidence—rather than unwillingness—to take part (Table S8). Consequently, consensus was achieved that patients with axSpA should be made aware of their role in treatment decisions and asked if they would like to be involved (Table 6).

Further insights demonstrated the need for HCPs to facilitate open conversations where patients feel valued. All stakeholders advocated for a personalised approach to treatment (i.e. based on gender, ethnicity, lifestyle factors, presenting disease features) and 92% recognised the need to align HCP and patient goals before proceeding with treatment (Table 6). Initial disagreement was observed over which stakeholder should have the final say in treatment decisions (Table S8). Stakeholders felt that while it was important to take patient opinions into account to avoid compliance issues, patients may have limited knowledge of clinical considerations or funding restrictions compared with HCPs. Therefore, consensus was reached once the statement was modified to acknowledge that both HCPs and patients should have an equal say and if disagreement remains, further discussions should be had. Although consensus was reached that the main barrier HCPs experience is a lack of time in appointments, those who disagreed suggested that this is a false perception that patient involvement takes time and reflects a reluctance to embrace a patient-centred approach. Table 7 contains the overarching CTA and associated stakeholder-specific discussions for the theme of patient–HCP consultations. See Tables S9–S11 in the supplementary materials for the CTA per stakeholder.

Table 7 Overarching CTA and associated stakeholder-specific discussions for the theme of patient–HCP consultations
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4. Optimal Initial Treatment

Discussion Points

Seven statements achieved consensus and were used within the optimal initial treatment narrative (Table 8, Table S12).

Table 8 Optimal initial treatment narrative
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Fifty percent of stakeholders, including payors, agreed that payors are sufficiently educated on axSpA and outcomes of different treatment options but that they are constrained from providing optimal initial care by higher authorities. Payors who disagreed explained that prioritising cost considerations over optimal initial treatment is an outdated belief and, in some countries, (e.g. Germany) there are no major restrictions to prescribing whatever treatment is necessary. Additionally, one payor noted that it is not only healthcare systems that influence optimal treatment but that guidelines created by scientific societies play a role too. Consensus was reached once the initial statement was revised to note that educating payors on the burden of disease and the outcomes of using optimal initial treatments will allow more patients to access the most appropriate biologics to meet their treatment goals (Table S12).

The contrast between cost considerations and personalised treatment was evident and felt to negatively affect treatment decisions and patient outcomes (Table S12). Open-ended questions revealed that cost was seen as the single most important factor in determining which treatment patients with axSpA received. Table 9 contains the overarching CTA and associated stakeholder-specific discussions for the theme of optimal initial treatment. See Tables S13–S15 in the supplementary materials for the CTA per stakeholder.

Table 9 Overarching CTA and associated stakeholder-specific discussions for the theme of optimal initial treatment
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Discussion

The Rheumacensus programme has revealed the current challenges in the management of axSpA across Europe, with a focus on patient empowerment from the perspectives of three key stakeholders: patients, HCPs and payors. By reaching consensus on the current SoC, identifying potential improvements, and proposing CTA, Rheumacensus provides a framework to drive key stakeholders to elevate the SoC for patients with axSpA.

The stakeholder leads shared area of focus which informed the modified 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.

Overall, 62 statements reached consensus throughout the Delphi process, 17 of which were used in the CC meeting to stimulate the development of CTA per stakeholder group. Despite some initial statements not reaching consensus, useful insights into the current and desired state/action were revealed by comments of those who disagreed, aiding refinement of some statements for revoting. The four key themes identified were interconnected, stemming from the shared area of focus—patient empowerment, patient knowledge, patient–HCP consultations and optimal initial treatment.

Overarching CTA for each theme highlight what is required to bridge the gap between the current and desired state/action in axSpA (Table 10), while individual stakeholder-specific CTA provide stakeholders with implementable actions that could contribute towards achieving the overarching goal (see supplementary materials). Providing CTA specific to each stakeholder at an achievable level gives a responsibility to each person involved in axSpA care and demonstrates the need for individual actions and multidisciplinary collaboration to realise the overarching CTA. Aspects related to patient empowerment underpin most CTA and so activities implemented to address one CTA may synergistically influence another within and/or across the four themes.

Table 10 Summary of overarching CTA generated across each of the four themes
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The CTA developed ranged from patient rights, effective communication, collaboration and education between stakeholders, personalised care and treatment access—highlighting the complexity of a multidisciplinary approach in axSpA management. It is evident that patient empowerment is only partly established through educating patients with axSpA on their disease—the HCP has a critical role in creating an environment that encourages empowerment. Whilst a person with axSpA can ask questions and raise concerns, the HCP needs to be receptive and supportive of their involvement. Therefore, HCP education on SDM and collaborative working is needed to help frame conversations with the patient, validating the patient’s role as a key stakeholder within axSpA care. A lack of time in appointments was recognised as a key barrier to HCPs fostering empowerment of patients and involvement in treatment decisions, but it is also important to note that patient empowerment is not remunerated in most healthcare systems so lacks incentive [16]. The Rheumacensus CC are taking forwards the CTA in their own peer groups and organisations to challenge these barriers and drive the movement for change towards patient empowerment.

Overarching CTA differ by how readily actionable they are. For example, future initiatives based on CTA 1.1, 3.1 and 4.2 (Table 10) may require modest funding, be straightforward to implement and could be realised within a relatively short timeframe. However, initiatives based on CTA 4.1 and 4.3 (Table 10) could necessitate substantial shifts in healthcare systems and practices, requiring more funding and time to address.

Unmet needs recognised within the Rheumacensus programme spanned across patient empowerment, multistakeholder education, access to high-quality materials, SDM and appropriate and timely treatment access. The CREA project (Spain) aimed to understand limitations in the current SoC in patients with axSpA and identify improvement strategies [17]. The CREA project revealed the most prominent limitations to care were lack of resources and time for clinical visits, as well as delays in diagnostic imaging [17], overlapping the Rheumacensus findings around the lack of time that HCPs have for consultations. In contrast to the Rheumacensus programme which involved multiple stakeholders from across Europe, the CREA project solely explored the perspective of Spanish rheumatologists, with 94% having worked in a public health hospital [17]. Other modified Delphi approaches undertaken to reach consensus within axSpA and wider rheumatology care (e.g. to reach consensus on a definition of axSpA remission [18] or provide consensus recommendations to enhance biologic prescribing in the UK for immune-mediated inflammatory diseases [19]) often lack pan-European and/or patient representation.

The Assessment of SpondyloArthritis international Society (ASAS) task force has previously followed a similar method to Rheumacensus to develop a set of nine quality standards to help improve the quality of healthcare for patients with axSpA worldwide. The ASAS taskforce, comprising 20 rheumatologists, two physiotherapists and two patients, proposed 34 key areas of quality improvement to ASAS members and patients, which were grouped by category, voted on and prioritised. Five key areas were identified as the most important to determine quality of care: referral including rapid access, rheumatology assessment, treatment, education/self-management and comorbidities. Education on the disease, the treatment options available and the role of exercise to facilitate self-management were recognised by both ASAS and Rheumacensus; however, the quality statements have a paternalistic and passive view to education, rather than educating patients so that they can be actively involved in their care and treatment decisions. The quality statements have an overall focus on management of disease activity rather than patients’ individual goals, which may be explained by the selection of participants, as many more HCPs than patients were involved throughout the ASAS process. The equal recruitment of stakeholders in Rheumacensus ensured that all perspectives were captured equally, which revealed the shared area of focus of patient empowerment. Rheumacensus further adds to the quality standards by providing a payor viewpoint in addition to HCP and patient perspectives for a holistic view of the challenges faced by each pivotal stakeholder involved in axSpA care. The CTA in Rheumacensus also propose realistic and tangible changes to care for all stakeholders to action, whereas the ASAS task force propose aspirational statements without providing the onus or specific actions to any particular group [20].

Personalised care was intertwined throughout the Rheumacensus programme, with consensus statements and further insights acknowledging the need to consider holistic treatment based on patient phenotype, gender, and socio-economic factors within axSpA care. Similarly, research by Marzo-Ortega et al. [10] revealed gender disparities that exist in terms of representation in clinical research, time to diagnosis, treatment outcomes and HR-QoL. Contributing factors included poor awareness of gender differences in disease manifestation, reported pain, historical biases that axSpA is a male disease and social factors (e.g. employment, marital status) [8, 10, 21]. Consequently, women experience frequent misdiagnosis and diagnostic delay compared with men, leading to detrimental impacts on HR-QoL and psychological health [10]. Raising awareness of gender disparities through HCP training, further research into gender-adjusted measurement tools and gender-stratified clinical trials are required [10]. These findings are consistent with Rheumacensus. However, the Rheumacensus programme aims to make the next step via the development of CTA to help realise these needs e.g. CTA 1.2 and 3.2 can help address these gender disparities (Table 10).

The strengths and uniqueness of the Rheumacensus programme are the inclusion of three key stakeholder groups involved in the front-line management of axSpA and representation from more than nine countries across Europe to gain a truly pan-European, broad perspective, setting this programme apart from others in axSpA. Limitations include the subjective grouping of the consensus statements and CTA and that not all statements were taken to the CC meeting, leaving some statements and potential CTA unaddressed. However, whilst the selection of statements was subjective, it was based on statements that described the desired state/action and so lent themselves to inspire CTA and those that were omitted often informed implementation and will therefore be considered when creating initiatives to address the CTA. A further limitation was that some stakeholders were unable to attend the virtual CC meeting and so there was incomplete representation of patient representatives and HCPs in live discussions (Fig. 1, Table 1). To partially mitigate this, absent stakeholders provided their CTA in writing post-meeting. Rheumacensus aimed to recruit a diverse stakeholder panel, but one-third of CC members were female (Fig. 1, Table 1). The small size of the stakeholder group is also a limitation, as well as the same group of stakeholders completing the Delphi e-consultations and participating in the development of the CTA; these factors may limit generalisability of the CTA and restrict the range of perspectives. However, the 12 stakeholders represented nine European countries, bringing a broad geographical perspective to the programme to ensure widely implementable CTA across Europe. The inclusion of an industry sponsor may represent a limitation of this programme. However, Delphi e-consultations were completed by stakeholders independently and the sponsor did not take an active part in the CC meeting.

Conclusion

The Rheumacensus programme has identified key unmet needs in the current SoC in axSpA, with a focus on patient empowerment and proposed CTA to bridge the disparities observed in axSpA care—setting the foundation for change. However, it is now imperative for all stakeholders to take practical steps towards addressing these CTA across Europe to improve the level of patient empowerment through education, effective communication, SDM, personalised care and increased awareness and timely access of appropriate treatment choices, to elevate the SoC for patients with axSpA.