Setting up an Axial SpA / AS clinic

Here at AStretch we do continue to get queries from physiotherapists who are keen to set up a service in their Trust. Whilst there has not been rapid, national adoption of AHP extended scope (or more recently advanced practice) led clinics, there has been a gradual change towards AS specific clinics and the physiotherapist is often at the forefront of such services. This is an area of development that has been shown to improve patient care and patient satisfaction (Cornell, 2005; van Rossen, 2012; Adshead, 2019). This blog is our first step in attempting to share the knowledge and expertise of experienced clinicians in the “how to” of establishing an axSpA clinic.

Unfortunately, this is a not a ‘one-size-fits-all’ scenario, hence we plan in this blog and future editions to share some reports from exemplar services. The 2020 NASS led national enquiry of English axSpA services is telling, and its’ recent nationwide review is pertinent to why we feel further explanation of the clinic role is now needed (https://nass.co.uk/wp-content/uploads/2020/01/Axial-Spondyloarthritis-Services-in-England-FINAL.pdf). More importantly we need to adjust our thinking as a consequence of the impositions from COVID-19 where the ‘new norm’ is transforming from traditional ‘face to face’ contact. Consequently, we need to think towards adoption of the ‘virtual world’ with regards to patient consultation models as a rheumatology physiotherapy professional subgroup when considering how we can best serve our axSpA patients. Crucially, the patient is the lead in these changes, we give examples where patient and public involvement in service developments has been a key component and we also have updates on patient satisfaction and further stakeholder review for more established axSpA clinics.

Historically, in the care of people with AS, there is some evidence of the benefit of physiotherapy involvement in rheumatology clinics (Cornell, 2005,) and in physiotherapy led clinics (van Rossen, 2012, Moran, 2016). One of the most successful implementation benefits from physio-led axSpA clinics have been recently further demonstrated (Adshead, 2019). This service, in London, was established by Rebecca Adshead and colleagues in 2010, and has consistently been shown to quite remarkably decrease the delay to diagnosis of axSpA. In fact since the introduction of this service it has been shown to reduce the delay to diagnosis from 8.5 years to approximately 3 years (Adshead, 2019). Nationally, however the challenge of the extent of unrecognised axSpA of patients referred to, and missed in, musculoskeletal clinical practice continues to exist (McCrum, 2020). The challenge remains to raise expertise and confidence within primary care teams to screen for and recognise inflammatory back pain and to refer onwards. If that referral onwards could be made to physiotherapy led clinics, akin to the model described by Rebecca Adshead and colleagues, the potential benefit for patients would be obvious.

As we warned, there is no one size to fit all but we include personal stories of examples of setting up an axSpA clinic can be achieved.

Example 1
Will Gregory, Consultant Physiotherapist (Rheumatology), Salford Royal NHS Foundation Trust

For the first year or so I did have a Consultant Rheumatologist next door to assist me; but I have always been seeing the patients instead of, rather than in addition to the Consultant or Registrar’s review. Clinical validity of this service is evidenced elsewhere, but for our managers and the business case we wrote we focused on the advantage of freeing up the medics by having the physiotherapist completing the reviews at months 6, 12 and 18 months of a 2 year cycle (with Consultant review at month 0 / 24) . On a personal basis, this continuity of input has allowed me to build up a good working relationship with this cohort of patients and the outcomes of better exercise / active lifestyle compliance are clear. The need for regular review of patients (3 monthly initially in the early 2010s, now 6 monthly) who receive biologic medication had added unnecessary ‘extra load’ on the medical team. Whereas in a physiotherapy led clinic, the frequency of review seemed more relevant to allow close monitoring of BASMI and adjustments of home and gym-based exercise programmes accordingly. Patient satisfaction in the physio-led clinic was very good (we used the Leeds Satisfaction Questionnaire to assess this) and is demonstrated in this poster (shared in case you want to replicate in your axSpA physio service!):

It has not been plain sailing since set up in 2011 and we have had to adapt the clinic to a number of issues. Firstly, was the NICE guidance to drop from 3 to 6 monthly assessments of biologics responsiveness. The consequence of this was that it enabled us to reduce follow up frequency and ‘open up’ the clinic to more patients. We then embraced the ‘virtual world’ and had a battle with the Informatics Department to attempt to be able to develop and implement an online Bath questionnaire collection resource. However, this proved to be ‘non-fruitful’ and we have had to remain paper based for our outcome measures (but we eagerly anticipate the BSR ePROM project going live!). I work with 10 excellent and amazing rheumatology consultants, somewhat understandably they all want to maintain an interest / specialism in axSpA; for that reason we do not have a named clinical lead for our axSpA service. The physio-led part of our axSpA service allows equity of provision for people with axSpA under the care of anyone in our team. Research has shown that BASMI scores have much better intra-rater than inter-rater reliability (Martindale 2012) and hence the ability to have one person measuring these over time allows a more accurate assessment. Crucially, the physiotherapist measuring BASMI directly ties into HEP adaptation where scores are showing big changes and also facilitates discussions about any improvements and benefits seen, linking the benefits into good exercise habits and practices.

We’ve had a couple of formal service user / PPI meetings in our AS service over this period. We have been keen at these open forums, as well as many other informal occasions, to get the users (patients) opinion of how the service is working. Process mapping on these meetings has allowed us to discover bottlenecks and inefficiencies in the patient journey. We’ve changed our communications on appointments, as well as attempting to change the way we collect outcome measures and the steps taken on a typical clinic visit.

The clinic continues to provide 6 slots per week which enable all patients who choose the physio-led model to access it. The majority of our axSpA cohort have chosen to access the clinic, but a few have remained loyal to their rheumatology nurse. Some have opted for the less frequent review by their Consultant Rheumatologist, but most are happy with a mixture of clinicians performing their reviews. Whilst patients on biologic medication make up the majority of the clinical cohort, since the NICE shift from 3 to 6 monthly review of biologics, there is availability to review those who take only NSAIDS or indeed have the good fortune to be able to control their symptoms by exercise alone. The clinic is also open for new patient referrals to access ‘work up’ to diagnosis. However, until recent changes most patients will have had a diagnosis prior to choosing the service, or perhaps be awaiting their MRI scan results and be aware of the potential for a differential diagnosis.

The term ‘annual review’ has become more of a buzz word since this clinic was established. We have ensured that our service as a whole encompasses all the review areas recommended within NICE guidance. However, formal implementation of each and every component within the annual review is difficult within one session and consequently our current service has adopted a shared application of this which takes place in both the the consultant-led review and the physio-led axSpA clinic.

Running the axSpA clinic ties in very nicely with also running the regular gym and hydrotherapy AS exercise sessions. I’m very fortunate to have a rheumatology physio team around me and hence these days I only make the first hour or so of our exercise session – this allows me to catch up with our regulars, to welcome new starters and, perhaps most importantly, to build a bridge between our rehabilitation and assessment / review services for our people with axSpA. It also means both this great group of people with axSpA and I get to pass on our experience and enthusiasm for axSpA exercise treatment to all the physios and therapy assistants who rotate through our rehabilitation service.

Example 2
Heather Harrison, Specialist Rheumatology Physiotherapist, York Teaching Hospital

The physio-led clinic in York is set up to see patients on an annual basis. There is a mixture of patients on biologics and those who manage with NSAIDs and other therapies. The clinic is called an Inflammatory Back Pain Clinic and also sees patients with psoriatic arthritis, if they have a predominantly spinal disease and patients who have inflammatory bowel related disease. Patients on biologics see the consultant at alternate 6 months. The Bath Indices are completed and advice and education given. The clinic runs at the same time as other consultant clinics so if a steroid injection is required it can be prescribed. The clinic runs every 2 weeks and provides 6 slots. The idea is that all patients with Inflammatory Back Pain would attend this clinic so they have metrology completed and physiotherapy input annually.

Example 3 
Claire Jeffries, Physiotherapy Clinical Specialist in Hydrotherapy and Rheumatology for Solent NHS Trust

Here follows an example of clinic set up from our service. Please do send us your examples to add to this resource. There will be many different ways of running axSpA physio clinics and we’re keen to collect information on the breadth of services across the UK:

Approximate service population: 600,000

Biologic patient pathway*:

Year 1 : Screening, week 12 or 16, 12 weekly thereafter

Year 2 : 6 monthly between CNS/physio clinic & consultant

*adhoc clinic appt is available if patient deteriorating or requiring review

Roles you might perform in the clinic

• Before seeing the patients review their medical history, previous consultations, and previous physiotherapy and pharmacological treatments.
• Liaise with appropriate Rheumatologist prior to seeing patient to clarify any issues
• Explain the risks and benefits of treatment options in ways that can be easily understood
• Offer verbal and written communication to allow patients to better understand their diagnosis and it’s management
• Objective assessment according to BASMI
• Objective assessment according to PsARC criteria
• Assess for need for physiotherapy, hydrotherapy, podiatry, occupational therapy, joint or soft tissue injection
• Consider offering short-term treatment with glucocorticoids (intramuscular or intra-articular) to rapidly improve symptoms.
• Use non-medical prescribing training to suggest prescriptions
• In people with established axSpA whose disease is stable, cautiously reduce dosages of disease-modifying or biological drugs.
• Offer analgesics (for example, paracetamol, codeine or compound analgesics) to people whose pain control is not adequate and is thought derive from non-inflammatory processes
• Prescribe and teach exercises for enhancing joint flexibility, muscle strength and managing other functional impairments. Provide written instruction including diagrammes for these exercises
• Medication review
• Assess the need for referral for orthopaedic surgery
• Biologics review – as per NICE guidance and departmental guidance
• Request bloods to monitor disease status, if appropriate (60% of axSpA patients don’t show active disease on ESR or CRP)
• To order immunological tests to review diagnostic states
• Request x-rays, ultrasound scans, MR scans, nerve conduction tests, guided injections, DEXA scans
• Measure for, order, and provide orthotics devices – walking stick, crutches, frames, basic hand splints, braces for knees, elbows, etc. Refer to orthotics assessments for more detailed / complex needs
• Book follow up appointments in hydrotherapy and physiotherapy; request follow up appointments within Rheumatology
• Liaise with other members of the team to get best results
• Dictate clinic letters according to departmental “gold standards”
• Update clinical diagnosis on relevant statistical collection platforms – EPR, biologics registers, Blueteq, departmental data list
• Discuss, offer and recruit participants into going local, regional and national research studies
• Dictate letters to other clinicians to instigate assessment and treatments as indicated
• Dictate letters to other agencies as requested by patients / indicated eg. discounted gym membership, occupational health departments about return to work guidance, benefits departments
• Feedback to patients (as appropriate) their results of x-rays, MR scans and ultrasound investigations and the implications of these findings to their ongoing care
• Re-enforce messages about given diagnoses and aid in patients coming to terms with this and accepting recommended treatments from the team
• Discuss return to work issues where relevant
• Inform patients of other relevant services; eg. self-help groups, community exercise programmes, national centres of excellence
• Provide educational experiences and relevance for observing medical students, visiting GPs, other students
• Liaise with the patients family in an appropriate way for their needs, the patients’ needs and to facilitate better treatment adherence
• Aid other members of the team in their consultations as indicated.
• Provide timely appropriate on the spot physiotherapy advice and treatments.

And that is where we have got to in a few frantic weeks of trying to respond to our most recent query on setting up an AS / axSpA physio clinic. We do hope this has been helpful, but appreciate this blog doesn’t flow fantastically, but it does at least show how we all do things slightly differently – and does mean a variety of resources to be used by those trying to set up their own clinics.

^^ Recommendations from the NASS (2020) document “Axial Spondyloarthritis services in England A NATIONAL INQUIRY”

Publication on this website is not a one-way street, we can work this information up over the coming weeks / months into a more comprehensive resource – please do consider this a “road test”. It is also part one of a series, so if you would like to feature your AS / axSpA physio clinic please do get in touch comms@astretch.co.uk, we would love to feature your work and experiences!

Claire

References

Adshead R, Tahir H, Knight P, Donnelly S (2019)  Oral Presentation OP0002 EARLY INFLAMMATORY BACK PAIN SERVICE – REDUCING TIME TO DIAGNOSIS IN PATIENTS WITH AXIAL SPONDYLOARTHRITIS – THE FIRST 8 YEARS Annals of the Rheumatic Diseases 2019;78:66-67. https://ard.bmj.com/content/78/Suppl_2/66.2.abstract

Cornell P, Haynes J, Richards S, Thompson P. Patient satisfaction with a combined rheumatology practitioner and physiotherapist ankylosing spondylitis clinic. Rheumatology. 2005 April;44: suppl 1 i153

McCrum C, Kenyon K, Cleaton J, O21 Unrecognised inflammatory back pain: a retrospective review of people presenting to musculoskeletal physiotherapy with undiagnosed axSpA, Rheumatology, Volume 59, Issue Supplement_2, April 2020, keaa110.020, https://doi.org/10.1093/rheumatology/keaa110.020

Martindale JH, Sutton CJ, Goodacre, L (2012) An exploration of the inter- and intra-rater reliability of the Bath Ankylosing Spondylitis Metrology Index. Clin Rheumatol (2012) 31:1627–1631

Moran S, Longton C, Bukhari M, Ottewell, L.  AB0708 Delay To Diagnosis in Ankylosing Spondylitis: A Local Perspective Annals of the Rheumatic Diseases 2016;75:1146-1147

Van Rossen L, Withrington R.H. (2010) Improving the standard of care for people with Ankylosing Spondylitis and a new approach to developing specialist ESP-led AS clinic. Musculoskeletal Care 10: 171-77 https://onlinelibrary.wiley.com/doi/full/10.1002/msc.1015