Improving Standards of Care for Axial Spondyloarthritis Through Project CATALYST: Experience From Two UK Centres

1. The Need for a New Way of Working

There is considerable variation in the delivery and quality of healthcare, patient pathways and patient experience in axial spondyloarthritis (AxSpA), which leads to inequity in healthcare across the UK (All Party Parliamentary Group for Axial Spondyloarthritis ²⁰²²; Headstrong Thinking Limited ²⁰²²).

Despite improved disease understanding and updated referral guidelines (Kay 2021; Kiltz ²⁰²⁰; National Institute for Health and Care Excellence ²⁰¹⁷; Ramiro ²⁰²³; Russell ²⁰²²), diagnosis of AxSpA is often delayed, with diagnostic delay of between 5 and 8 years (Barnett 2020; Eddison ²⁰²³; Gregory ²⁰²²; Russell ²⁰²²; Zhao ²⁰²¹). The degree of diagnostic delay is suggested by multiple appointments in Primary Care and with physiotherapists and other hospital specialists (Gregory 2022).

People with AxSpA awaiting diagnosis experience significant pain and functional limitation. Delayed diagnosis has a significant impact on quality of life (QOL), greater likelihood of work disability, low mood/depression and higher direct and indirect healthcare costs together with reduced spinal mobility and radiographic disease progression, all of which highlight the importance of timely diagnosis (Yi 2020; Zhao ²⁰²¹).

Research into patient values in AxSpA by National Axial Spondyloarthritis Society (NASS) in 2022 revealed mixed patient experience. The mean satisfaction score was 6.4/10 andalmost one‐fifth of patients were dissatisfied with their care. Patients felt that they were not receiving ‘quality care’ defined within three key strands: (1) to be believed, seen and heard and respected for their own knowledge, (2) to experience a purposeful, consistent pathway of care and (3) to be helped to make a plan to help themselves at home. There are significant gaps between expectation and patient experiences. Patients value being able to work as a team with healthcare professionals (HCPs) and having active involvement in making management decisions (Headstrong Thinking Limited ²⁰²²).

The NHS Long Term Plan outlined how the NHS will move to a new service model in which patients have options, better support and reliable joined‐up care at the right time in the optimal care setting (NHS England ²⁰¹⁹). This includes utilising Multidisciplinary Teams (MDT) in the care of people with AxSpA and encouraging patient‐initiated follow‐up (PIFU) (Kay 2021; NHS England ²⁰²²). Outpatient transformation was highlighted as essential for elective recovery in the 2022/23 Priorities and Operational Planning Guidance (NHS England ²⁰²³).

The aCtivATing optimAL patient journeYS to improve patienT care in Axial Spondyloarthritis (CATALYST) project was a collaborative working project between AbbVie and two rheumatology departments with the aim of improving the patient journey, standards of care and outcomes in AxSpA. CATALYST started in early 2023 and will run for 2 years and crucially, each party contributed equally to the project to maximise a successful outcome.

2. Making the Change: Identifying and Fulfilling Local Needs

Specific needs and logistics were agreed between key NHS stakeholders, including Consultant Rheumatologists, Advanced Clinical Practitioner (ACP) Physiotherapists, MDT personnel and business managers.

CATALYST used an iterative approach to affect change (Figure 1). Scoping meetings, with mapping exercises were used to establish the current patient journey and identify opportunities for improvements in the standard of care. Surveys were carried out to understand patient views and HCP understanding of AxSpA diagnosis, referral and management.

FIGURE 1.

Approach to raising standards of care.

Once gaps were identified and outlined, tailored face‐to‐face and virtual workshops were carried out to propose, discuss and agree interventions. Measures of success included improved waiting times, reduction in healthcare delay to diagnosis, patient outcomes using disease activity and QOL scores, patient satisfaction and patient self‐management.

After educational gaps were identified, tailored interactive medical education (face‐to‐face or virtual) was delivered with an education day provided to musculoskeletal (MSK) clinicians. Education modules were written in conjunction with national experts and accredited for Continuing Professional Development. Feedback was elicited after the workshops and medical education.

Throughout the project, ongoing process mapping was tested and revised.

CATALYST identified key areas for development focussing on holistic patient care, including location of delivery of care, access to flare support, MDT working, enhanced HCP skills and patient education.

HCP surveys revealed that most (86% and 79%) attendees rated the medical education programme 4/5 or more for increasing their understanding and for confidence in applying this new knowledge to their clinical role, respectively.

Key themes included increased understanding of the importance of early detection and onward referral of IBP and AxSpA from Primary Care as well as creating links between Primary and Secondary Care to improve the patient journey and increased confidence in screening and making a diagnosis including using the SPondyloArthritis Diagnosis Evaluation [SPADE] tool (Barnett 2020).

3. The New Approach: ACP Physiotherapist‐Led AxSpA Clinics

The two centres developed individualised pathways from different baseline services.

3.1. Belfast

The first joint Consultant and ACP Physiotherapist‐led AxSpA clinic was held in September 2023 and revealed that education was crucial for project success.

Referrals are made using a digital referral process. Collaboration and training enabled a broader group of individuals who typically assess back pain to effectively identify inflammatory back pain and refer to the AxSpA clinic. The SPADE tool is recommended to enhance the accuracy and speed of referrals. Failure to identify and refer patients to the correct clinic and not triaging effectively may result in prolonged delays in diagnosis, which could impact patients' QOL.

The AxSpA clinic is currently held monthly, with capacity for eight new patients and access to ACP Physiotherapist, Consultant, Registrar and/or Senior House Officer. A holistic multidisciplinary assessment including patient reported outcome measures (PROMs) is carried out. The ACP Physiotherapist is an Independent Prescriber, which will enhance holistic management and clinic capacity.

Patients with a confirmed or suspected diagnosis of AxSpA are referred to physiotherapy and scheduled for medical review. Pre‐existing rapid‐access clinics, physiotherapy self‐referral, an in‐patient programme and a nurse‐led helpline provide additional accessible support. This approach empowers patients in self‐management early in their disease journey.

Patients who are referred to the clinic in whom AxSpA is ruled out are discharged with reassurance and information about back pain, together with signposting to resources and referral to social prescribing activity schemes. People are referred to MSK Services if needed; however, proactive patient intervention in the clinic aims to reduce the need for further healthcare appointments.

3.2. Coventry

The first ACP Physiotherapist‐led AxSpA clinic was held in January 2023 after workshops identifying a clear need to offer specialist holistic care.

Electronic referrals are received from Primary Care via the Clinical Care GP Gateway, and all other referrals are sent via internal mail/electronically and triaged by the medical team.

The AxSpA clinic is held three‐times a month with capacity for 15 patients and access to ACP Physiotherapist, Consultant and Clinical Specialist Physiotherapist. Patient history and examination are not taken by the Consultant or ACP Physiotherapist. The ACP Physiotherapist requests imaging and blood tests and has completed non‐medical prescribing training.

Patients with a confirmed or suspected diagnosis of AxSpA are referred to physiotherapy on the day where possible and given follow‐up appointments as required.

Patients who are referred to the clinic in whom AxSpA is ruled out are discharged from the pathway and referred to physiotherapy as appropriate.

Once a month there is a specific physiotherapy AxSpA clinic with the ACP Physiotherapist and Clinical Specialist Physiotherapist focussing on group education and exercise. At each clinic, patients are signposted to improve their self‐management with education and exercise.

AxSpA patients in a flare have access to a weekly rapid access urgent physiotherapy clinic, together with email and telephone helplines. Patients are also able to self‐refer to physiotherapy.

There is a weekly meeting with the Clinical Specialist Physiotherapist for all therapists to provide clinical support to help improve confidence and clinical reasoning.

4. Improved Outcomes

Early data are available from 31 patients from Belfast and 48 from Coventry. Mean and median times to diagnosis were 13.9 and 10 months (5–48 months) in Coventry and 2.9 and 3 years (0.5–5 years) in Belfast.

In both units, most patients were referred to the new pathway from Primary Care (69% in Belfast and 81% in Coventry). The mean waits from GP referral to assessment were 2 months 11 days and 3 months, respectively.

Waiting times for AxSpA physiotherapy were improved versus waiting times for routine MSK physiotherapy averaged across sites in the Trusts: 8 versus 36 weeks in Belfast and 8 versus 16 weeks in Coventry. In Coventry, historical data indicated that prior to the new approach 25 patients received physiotherapy on the day of their clinic visit in January to March 2023, for the same period in 2024 almost twice as many patients were seen (n = 44). Rates of onward referral for physiotherapy fell from 44% (11/25) to 32% (14/44) over the same period. AxSpA‐specific physiotherapy waiting times in Coventry fell from 7 months to 2 weeks for rapid access physiotherapy and 2 months in the AxSpA‐specific clinic.

In Coventry, of the 23 patients with AxSpA with available data who had physiotherapy (mean of 5.8 sessions, range 2–10), the mean outcomes were improved as follows: Musculoskeletal Health Questionnaire gain of 17.2, Patient‐Specific Functional Scale gain of 7.3, Bath Ankylosing Spondylitis Disease Activity Index reduction of 1.8, Bath Ankylosing Spondylitis Functional Index reduction of 2.0 and Ankylosing Spondylitis Quality of Life reduction of 5.0.

ePROMs, delivered using a tablet, have been used in Belfast since October 2023 to measure PROMS before and after 1 week of intensive inpatient physiotherapy, saving 30 min per patient versus conventional PROMs. The success of this work led to the use of ePROMS in outpatient clinics.

Early feedback from patients attending the new AxSpA clinics was positive, with patients particularly encouraging about the whole team approach, rapid diagnosis and the role of the ACP Physiotherapists.

The benefits of ACP Physiotherapists within Rheumatology care pathways to reduce waiting times and improve patient pathways and patient care are well established (Adshead 2015, 2020; Coulthard and Gotting ²⁰²²; East ²⁰²³; Gotting ²⁰²⁰; Hepburn ²⁰²³; Monahan and Sayce ²⁰²²; Van Rossen and Withrington ²⁰¹²). Indeed, many UK units now use an ACP Physiotherapist‐led clinic approach and core competency and capability frameworks have been developed as a step towards national and international standardisation of ACP Physiotherapists (Gregory 2021; Tawiah ²⁰²³).

Services have demonstrated that ACP Physiotherapist‐led clinics can reduce the time to diagnosis from a reported UK‐wide 8.5–3.4 years in Scotland (Hepburn 2023) and 3 years in England (Adshead 2020). Whilst others have significantly reduced both waiting times and the number of patients requiring Consultant‐led care (Coulthard 2022; East ²⁰²³; Gotting ²⁰²⁰).

The key strength of the project was the collaborative working approach, deciding on local areas of improvement, enhancing competencies and skills of HCPs and defining measures of success at baseline, together with collection and dissemination of data to drive long‐term change. Weaknesses include challenges in making the changes as quickly as we would have liked and reporting early data in this report.

5. Conclusion

In conclusion, collaborative working between stakeholders resulted in an improved pathway for AxSpA, enhanced standards of care and patient outcomes and allowed clinicians to develop and extend their clinical roles and expertise. The new pathways are in their infancy, and we present early data on limited numbers of patients; however, as shown in Table 1, the objectives of the project have been met successfully. This work resulted in an OSCA Rising Star award for a Belfast staff member and a NASS bronze Change Maker Award in the Houses of Parliament for Belfast staff member.

TABLE 1.

Mapping project objectives to methods and impact.

Project objectives	Methods	Impact
To measure the outcomes of agreed interventions to overcome identified barriers and that ensure the project has been successful	To understand whether the project will improve disease control through a holistic MDT approach Throughout the project the new approach was tested and revised through ongoing process mapping and collaboration	Measures of success included improved waiting times, reduction in delay to diagnosis, patient satisfaction, patient self‐management, project is still ongoing so limited data, but what is available is positive.
To understand the patient journey from symptom onset to referral into specialist services to diagnosis, identifying barriers and bottlenecks	Scoping meetings, with mapping exercises to establish the current patient journey, were held to identify opportunities for improvements in the standard of care for patients with AxSpA	Clear understanding of the current patient journey enabled changes to the referral and management pathway to improve patient care.
To gather quantitative and qualitative information to be used to identify areas of opportunity and best practice to improve services for both patient and HCP stakeholders	Workshops with the key rheumatology stakeholders identified opportunities to raise the standard of care for AxSpA patients Improvements to referral process and education to ensure appropriate referral from Primary Care and use of the SPADE tool Surveys were carried out throughout the project to understand patient views and HCP understanding of AxSpA diagnosis, referral and management	Clear understanding of views of key rheumatology stakeholders and of patients ensured that the changes made to the pathway were appropriate and met the needs of all stakeholders. Increased use of the SPADE tool and more efficient referral from Primary Care
To identify education needs and address those identified gaps in the MDT skillset via tailored education.	Educational needs assessed using questionnaire and during the scoping meetings Tailored education modules, written in conjunction with national experts in the field and accredited for Continuing Professional Education were provided. Individualised training provided for AxSpA team members	Clear understanding of educational needs to ensure that the education provided was tailored to specific needs Post‐training questionnaires demonstrated improvements, 86% of respondents rated medical education programme ≥ 4/5 for increasing understanding of the topic and 79% were extremely confident (≥ 4/5) in applying knowledge to their own practice
Where relevant and appropriate, to facilitate development of specialist clinics, or support provision of specialist services, including the role of the ACP Physiotherapist	Face‐to‐face and virtual workshops tailored to the needs of the specific clinicians and departments were carried out to propose, discuss and agree interventions to improve patient care	AxSpA clinics up and running with physiotherapy on the day provided at one site Rapid‐access physiotherapy clinics, physiotherapy self‐referral and email/telephone helplines provide additional easily accessible support once patients have a diagnosis Role of the ACP physiotherapist has expanded in the clinics and both ACP Physiotherapists are Independent Prescribers Patients are signposted at every session to improve their self‐management using education and exercise
To facilitate a safe reduction in routine outpatient appointments, in line with the NHS Long Term Plan to support future development of PIFU		Onward referrals and burden to the healthcare system are reduced with physiotherapy on the day of clinic visit, physiotherapy self‐referral and email/telephone helplines Patients are signposted at every session to improve their self‐management using education and exercise Reduction in waiting times
To standardise patient assessment and treatment processes ensuring that they are in line with evidence‐based guidelines	Clear pathway to support standardisation of care in assessment and treatment	Pathway now ensures standardisation of care in assessment and treatment

Enhancing competencies and skills of all HCPs throughout the patient journey from Primary Care into Specialist Care was crucial to successfully improving standards of care for patients with AxSpA. Most patients were referred onto the pathway from Primary Care, supported by education around the importance of early detection and onward referral routes, diagnosis and screening.

A key component of the project was easy access to specialist Secondary Care support. In both units, there are rapid access urgent physiotherapy clinics, patients are supported by email and telephone helplines and patients can self‐refer for physiotherapy, all of which can be accessed once patients have received their diagnosis. This approach should avoid patients remaining in Primary Care and reduce delay to diagnosis.

The two units developed pathways suitable for their localities and demands; this bespoke individualised approach allowed resources to be focused where they would achieve maximum benefit. Given the strain which the NHS is under, such collaborative working projects have the potential to improve patient care and reduce NHS costs over the longer term.

Author Contributions

All authors contributed to the writing of this manuscript; they all reviewed the manuscript and suggested appropriate edits throughout the writing process.

Conflicts of Interest

Catherine Tonks, Caroline Clarke and Keir Young have no conflicts of interest. Adrian Pendleton has received speaker fees from AbbVie, Novartis and UCB. Niamh Kennedy has received speaker fees from AbbVie. Tim Blake has received speaker fees from AbbVie and Nordic Pharma. Liesbet Van Rossen and Tanya Rooney are full‐time employees of AbbVie and may hold AbbVie stock or stock options.

Data Availability Statement

The authors have nothing to report.