2022 – A year in axSpA research! Part one

Hello Everyone!

I hope you enjoyed reading the 2021 series of the blog article summaries.

We have finally caught up, and are now in the first of the 2022 series! This blog is based on an article from Project Nightingale’s own Rosie Barnett and Dr Raj Sengupta (Consultant Rheumatologist)! The article was published in January of this year and was chosen for a special themed issue in the scientific journal “Arthritis Care and Research (AC&R)”.

In this article, Rosie and Dr Sengupta reflect on some of the changes made to axial spondyloarthritis (axSpA) rehabilitation at the Royal National Hospital for Rheumatic Diseases in Bath due to Covid-19. They outline the process of moving from an in-person rehabilitation programme to a virtual programme due to the Covid-19 pandemic, discuss the potential benefits and pitfalls of so-called “virtual rehabilitation”, the usefulness of completing data in-between clinic appointments, and also further research that the Project Nightingale team are currently working on.

An editorial is also summarised which provides a summary of findings on all the articles included in the special theme issue of AC&R, titled “Rehabilitation Sciences and The Rheumatic Diseases”.

The Future of Axial Spondyloarthritis Rehabilitation: Lessons Learned From COVID-19

January 2022. Barnett and Sengupta. https://onlinelibrary.wiley.com/doi/10.1002/acr.24780

As I am sure you are all aware, physiotherapy and exercise are key in the management of axial spondyloarthritis (axSpA). They can help with strength and mobility, and the endorphins released during exercise can lift your mood, relieve stress, and even act as a natural painkiller. Research has suggested that supervised physiotherapy may be more effective than unsupervised home-based exercises. However, due to the Covid-19 pandemic in 2020, it became increasingly difficult for people to access this supervised physiotherapy.

As a result, there have been changes in the healthcare of people with axSpA such as 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. In this review article, a summary is provided of changes that have been introduced to support rehabilitation in axSpA during the pandemic at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath.

Impact of the first-wave of the pandemic on people with axSpA

The need for programmes with educational material, self-management support and physiotherapy to be delivered in an online setting is reinforced after reviewing data from the first-wave of the pandemic.

An international study named REUMAVID surveyed 1,707 people with rheumatic musculoskeletal diseases (RMDs) from 15 European countries, 47.5% of whom had an axSpA diagnosis.

· Almost half of all the people in this study (45.0%) reported worsening health during the pandemic.
· People reported increased alcohol consumption, smoking, weight gain, and reduced physical activity, including an inability to continue rehabilitation exercises or physiotherapy programmes.
· 60.6% of survey respondents reported being unable to keep their rheumatologist appointment, 92.5% of which were cancelled by their health care provider.
· Over a half of people in the study reported their health to be “fair to very bad”, and reported poor well-being as indicated by the World Health Organization Five Well-Being Index

The National Axial Spondyloarthritis Society (NASS) also conducted a similar study in the UK, and found that almost half of the people in their study reported a worsening of symptoms and deterioration of both general and mental health during lockdown.

Change in axSpA rehabilitation services during COVID-19

As you may be aware, the RNHRD axSpA 2-week inpatient physiotherapy rehabilitation programme has been running since the 1970s, providing people with the confidence and tools to self-manage their condition. It is thought to be particularly beneficial for newly diagnosed people, those in flare, people who are struggling to manage their condition, post-surgery (e.g., following hip replacement), or to maximize outcomes of biologic therapy.

The importance of maintaining some form of supervised axSpA rehabilitation delivery during the pandemic was recognised very early on by the RNHRD team. Therefore, the highly skilled specialist physiotherapists and rheumatologists decided to work with behavioural scientists at the University of Bath to adapt the course to an online format, to continue providing a high level of care to people with axSpA. The inpatient rehabilitation programme was subsequently delivered online via Zoom, incorporating the core components of the in-person course (education, self-management, and physiotherapy). Other organisations such as NASS also began to host online educational events, and as a result now have a wealth of legacy resources available across its platforms, including recorded physiotherapy sessions delivered live by specialist physiotherapists.

Introduction of remote data collection for axSpA services

Along with being able to take part in virtual rehabilitation from the comfort of their home, people with axSpA at the RNHRD are also able to complete patient-reported outcome measures electronically as well. This includes measures such as disease activity (Bath Ankylosing Spondylitis Disease Activity Index [BASDAI]), function (Bath Ankylosing Spondylitis Functional Index [BASFI]), quality of life, fatigue (Functional Assessment of Chronic Illness Therapy), anxiety and depression (EuroQol 5-domain instrument), work productivity (Work Productivity and Activity Impairment questionnaire), and sleep (Jenkins sleep scale). This means that clinicians can look at individual patient-level data in between clinic appointments which was not possible before!

As symptoms can fluctuate daily in axSpA, implementation of remote monitoring and digital technologies such as wearable devices (e.g. fitness trackers or smartwatches) and smartphones apps for granular, daily remote monitoring of symptoms and activity can be very helpful. At the RNHRD, more than 350 patients are now registered with the RNHRD Project Nightingale study, whereby individuals can use a smartphone app to track daily self-reported data in between clinical appointments, as well as before, during, and after course attendance. The type of data recorded include pain, mood, stress, sleep, fatigue, flare, use of anti-inflammatory drugs, and exercise in addition to less explored aspects of the disease such as menstrual cycle, caffeine intake, and screen time. People who have been taking part in the Project Nightingale study app have expressed how it has helped them better self-manage and understand their disease, while providing them motivation to exercise independently following intensive, supervised rehabilitation. Thank you to all those who have taken part so far and provided your feedback!

If you are not part of Project Nightingale, but would like to know more about it, please email hello@projectnightingale.org!

Considerations for future axSpA rehabilitation delivery

Feedback from those that have taken part in the RNHRD virtual rehabilitation programme has suggested that the future may involve a blended combination of in-person and online physiotherapy, with complementary remote data collection pre- and post-course. Online therapy could be implemented either as a “top up” between in-person appointments or as an alternative for those who may not have the time to commit to an intensive rehabilitation program, such as the 2-week inpatient course delivered at Bath.

Further evidence is needed of the benefits of virtual rehabilitation programmes (sometimes referred to as telerehabilitation) compared to in-person programmes. There is evidence available to suggest telerehabilitation is a suitable substitution for face-to-face interventions in chronic nonmalignant musculoskeletal pain, including some forms of arthritis. Research has also been conducted suggesting that telerehabilitation may be effective in improving symptoms in RMDs.

At the time of writing this article, the authors stated that there is a need for better quality clinical trials and systematic reviews to provide sufficient evidence on effectiveness of telerehabilitation. Since this was written (as publishing can take a while!), we are pleased to say that the Project Nightingale study team are part way through a systematic scoping review exploring the types of telerehabilitation interventions that currently exist in RMDs, and how effectiveness has been measured. There is a large amount of data that has been collected through this scoping review, and we will be able to provide more information about telerehabilitation interventions in the future. This will also help to understand what other interventions are currently available for axSpA, similar to the virtual rehabilitation programme at RNHRD.

Wider implementation of digital rehabilitation for axSpA could be critical in terms of relieving pressure from the health services, reducing wait times, and reducing travel burden for patients. However, we foresee that some form of in-person, supervised delivery will still be vital, particularly for those individuals who are newly diagnosed, fearful of movement, or who may have more severe disease and need closer supervision to prevent injury during exercise. Another important factor to consider is digital exclusion, which refers to those who lack the access, capacity, skills, motivation and/or trust to confidently go online. Studies have shown that nonusers of the internet, devices, and online services are increasingly in vulnerable groups and may be older, less educated, and more likely to be unemployed, disabled, or socially isolated. These patients should perhaps be prioritized for in-person, face-to-face health care delivery.


Physiotherapy and rehabilitation are key in the management of axSpA. The pandemic has seen a shift towards virtual physiotherapy and education, in addition to an emphasis on remote monitoring. Although these digital interventions are useful, and served an immediate purpose within the healthcare system during the pandemic, it is important to highlight the need for face-to-face services, particularly during diagnosis or during a flare of symptoms.

Moving forward, it will be key for people with axSpA, specialist healthcare professionals, researchers and patient organisations such as NASS, to work together to determine how best to navigate this new world of blended virtual/ in-person service provision – to ultimately ensure that people with axSpA and other RMDs are receiving the best possible care, whether seen remotely or in-person.

Has your usual care been directly affected by Covid-19, such as being changed to remote or virtual? Did you complete the Project Nightingale app and find data collection useful in-between clinic appointments? If you would like to share your experiences, feel free to email me on: ns2271@bath.ac.uk

Introduction to the Special Theme Section: Rehabilitation Sciences and the Rheumatic Diseases

January 2022. Allen and White. https://onlinelibrary.wiley.com/doi/10.1002/acr.24836

The article summarised above by Barnett and Sengupta was included in the special theme section of the Arthritis Care and Research journal. In an editorial for this issue, an introduction to the theme ‘Rehabilitation Sciences and The Rheumatic Diseases’ is provided. Out of 40 manuscripts submitted for this theme issue, ten were selected that had high relevance to the topic. Some key themes emerged from these manuscripts which are highlighted in this editorial.

Barriers and facilitators to exercise and rehabilitation

First, there were several manuscripts that focused on barriers that people with rheumatic disease experience in trying to engage in exercise and rehabilitation programmes. These barriers include a range of physical symptoms that need to be considered when designing and delivering programmes for individuals with rheumatic conditions. Within the studies themselves, people who took part mentioned facilitators to engaging in exercise and rehabilitation programmes, and more needs to be done to learn about these facilitators when developing new programmes.

Delivering exercise and rehabilitation interventions via telehealth

Second, as with the Barnett and Sengupta summary, some articles focused on delivering rehabilitation and exercise programs via telehealth which became crucial following the Covid-19 pandemic. As we have seen, this type of rehabilitation has greater reach and access for those who need it most. However, telehealth-delivered rehabilitation may not be suitable for all, as there are some groups of people who would have greater benefit through in-person rehabilitation. There is still a lot to learn about the best way to utilise telehealth strategies and in what situations they are most appropriate.

How can we promote better long-term maintenance of exercise and rehabilitation?

Third, it was reported that after completion of formal exercise and rehabilitation programmes, the level of exercise maintained diminishes over time. Therefore, better models and strategies for enhancing long-term maintenance to exercise and rehabilitation strategies are needed. This is a particularly important area to focus on in the future, as it is possible for people to return to their previously compromised physical and psychological functioning if exercise levels are not maintained.

More research is needed for axSpA!

Finally, the studies in this special issue highlight the need for more research to be conducted on rehabilitation interventions in specific conditions, namely psoriatic arthritis, spondyloarthritis, and systemic sclerosis. The impact of exercise and rehabilitation interventions in these conditions needs more understanding, as they are currently under-researched areas. Our work in Bath is really trying to build on research in axSpA, and it is great to see this work gaining momentum and recognition. Special journal issues such as this really draw attention to key areas needing research, and will hopefully promote more work in this area in future.

In 1994, the Arthritis Care and Research journal had previously published a theme issue on ‘Exercise in Arthritis’. Since then, the knowledge in this area of literature has already grown tremendously. But of course, more work still needs to be done!

With researchers and clinicians dedicated to improving the lives of patients through rehabilitation, and technological innovations moving at a fast pace, there could be great advancements highlighted in the near future.

Summary & Sign Off!

I hope you have enjoyed reading these summaries of research, and found the information useful.

If you want to share your experience of any issues related to this blog, please contact me on: ns2271@bath.ac.uk. I would love to hear from you!

Best Wishes,

The Project Nightingale Team