The Lancet Rheumatology, 1st December 2020: COVID-19 in axial spondyloarthritis care provision: helping to straighten the long and winding road
Introduction
A couple of weeks ago, we discussed the impact that rheumatology research has had on the current pandemic (see: https://www.projectnightingale.org/blogs/2020-a-year-in-axspa-research-part-three/). This week, we will be discussing the excellent article by Helena Marzo-Ortega, Simon Whalley, Jill Hamilton and Dale Webb, highlighting the impact of the pandemic on axial spondyloarthritis (axial SpA) care.
As the world attempts to navigate the inevitable COVID-19 second wave, it has become clear that existing inequalities in healthcare have been further exacerbated during the pandemic. Particularly for conditions such as axial SpA, where services were already lacking. In the UK, earlier this year (in that somewhat distant pre-C19 time!), the National Axial spondyloarthritis Society (NASS) published the results of the national inquiry by the APPG (All-Party Parliamentary Group) on Axial Spondyloarthritis: https://nass.co.uk/news/mp-led-inquiry-reveals-failings-in-the-provision-of-axial-spondyloarthritis-care-across-england/. This inquiry revealed significant gaps in axial SpA care and has been crucial in raising awareness of the current failings (see figure below).
Although this inquiry has undoubtedly been one of the first key steps to highlighting and calling for urgent changes/commitments to improve axial SpA care in the UK, COVID-19 has undeniably accelerated much needed change. This week’s discussed publication by Dr Helena Marzo-Ortega and colleagues touches upon this acceleration. The authors discuss results from a large-scale survey ran by NASS from May to July 2020, during the first period of lockdown and early recovery phase in the UK. The survey generated responses from 873 people with axial SpA and 80 healthcare professionals, to help better understand the impact of COVID-19 on people with axSpA and their health-care services in the UK.
Key findings - Overall
Key findings were the variation in access to services, deterioration in outcomes, and the importance individuals placed on face-to-face consultations. Importantly, key issues were highlighted that require urgent attention: such as the optimisation of digital services in the NHS and ensuring that gaps in digital infrastructure and staff skills are addressed.
Furthermore, improved clinical coding is crucial to identify those people most at risk/ vulnerable and who require urgent attention. Not only in the event of further outbreaks, but also just to ensure the best possible care of patients in everyday service provision. Emphasis should also be given to ensuring that resources are in place to prevent the potential deterioration of patients while dealing with the backlog in appointments caused by the pandemic. Particular attention should be given to those who are newly diagnosed. Ensuring that people have access to the mainstays of axial SpA treatment – physiotherapy and hydrotherapy – is also crucial.
Key findings – Patients
· 60 (25%) of 237 patients who needed to access services during the pandemic were unable to do so and 241 (32%) of 753 were not aware of what services were available
· Only 70 (10%) of 733 patients found their symptoms improved during lockdown, whereas 343 (47%) of 733 found their symptoms got worse and 320 (44%) of 733 reported no change
· Nearly half of respondents said that their general health and mental health had also deteriorated during lockdown
· Although many respondents welcomed the positive effect of digital services, 562 (86%) of 657 highlighted the importance of face-to-face rheumatology appointments, and 404 (61%) said the same for physiotherapy access, the main stay of treatment in axSpA
Key findings – Healthcare professionals
· 31% reduction in the overall number of operational sites providing care for axSpA since the first national lockdown
· 27 (44%) of 61 services were unable to provide face-to-face care for patients with flare, and 23 (38%) of 60 services could not maintain specialist physiotherapy support
· Crucially, considerable variation in the provision of digital care was identified, with 38 (66%) of 58 services providing virtual flare management and 27 (47%) of 58 providing remote identification and diagnosis, resulting in a lottery for patients that is entirely dependent on where they live
· The widest variation was seen in the time taken to identify high-risk patients under their care, with 30 (58%) of 52 respondents reporting being able to identify this cohort within 2 weeks or less, seven (13%) saying it took 3–4 weeks, and three (6%) saying it took 4–6 weeks. Five (10%) respondents reported that they still had not been able to identify all high-risk patients by July, 2020, 4 months after shielding guidance was issued by the UK Government, largely as a result of coding challenges
Creation of minimum axial SpA service specifications, put forward by the axial SpA APPG
Following the results of the present survey, in an excellent combined effort, people with axSpA in collaboration with their clinicians have now produced a set of minimum axSpA service specifications to be put forward by the APPG for axSpA and NASS to inform commissioners across the country: https://nass.co.uk/wp-content/uploads/2020/10/APPG-Recommendation-Paper-COVID-19-Axial-SpA-for-website-1.pdf.
These specifications were produced to assess the resilience of local services and to support and ensure the continued provision of core services in the event of future outbreaks. Further discussion with key policy makers and national agencies including NHS Digital, which has responsibility for overseeing the development of patient coding (to identify those people most at risk/ vulnerable and who require urgent attention), should ensure that existing diagnosis and risk coding is fit for purpose and well understood by those delivering services. This is of course vital not only for axSpA, but for every health condition. Indeed, the pandemic has drawn attention to failings across all healthcare sectors – promoting a prioritisation of initiatives to revolutionise and optimise future patient care.
Conclusions
To summarise, the authors concluded that although the COVID-19 pandemic has highlighted existing gaps in service provision for people with axSpA, it has also accelerated change – with the introduction of virtual and remote consultations, including care for flares, and an increased interest in digital service provision and the importance of remote monitoring. Indeed, it has required a rapid adaptation of both patients and clinicians to new ways of working. And has highlighted the need for imminent changes to enhance both the resilience and efficiency of our current healthcare system. To ultimately provide optimal support and the best possible care for people with axSpA.
Author profiles
Dr Helena Marzo-Ortega, Consultant Rheumatologist & Rheumatology Advisor to NASS
Dr Marzo-Ortega is a Consultant Rheumatologist for the Leeds Teaching Hospitals NHS Trust and an Honorary Clinical Associate Professor at the University of Leeds. She is the Clinical Lead of the Spondyloarthropathy service at the Section of Musculoskeletal Disease and the Clinical Lead for the MSK Specialty Group of the West Yorkshire UKCRN CLRN. Her main areas of interest are within the field of early arthritis, undifferentiated arthritis and spondyloarthritis including Psoriatic arthritis, with a special focus on the role of imaging biomarkers and biologic therapies. Dr Marzo-Ortega also led October’s special supplement within the journal “Rheumatology”, focussed on axial SpA. Read about this supplement and our contribution here: https://www.projectnightingale.org/blogs/special-supplement-within-the-journal-rheumatology-1/.
Simon Whalley, Senior Account Director at M&F Health & public enquiry point for the APPG on axial SpA.
Jill Hamilton, Head of Policy & Health Services at NASS
Jill is responsible for raising awareness of axial SpA among healthcare professionals, and policy and decision makers. Jill also works with the events coordinator at NASS, strategically overseeing event themes and content.Dr
Dale Webb, NASS CEO
Dale is Chief Executive and has overall responsibility for the management of NASS. He works with policy makers, funders, service commissioners and professional bodies in order to raise awareness, raise funds and ensure that people with axial SpA get earlier diagnosis and access to effective treatment and rehabilitation. Dale leads an outstanding team of staff who deliver an ambitious programme of work to support the axial SpA community across the UK. You can follow him on Twitter @NASSchiefexec.