Category: Uncategorized

Research Corner: Understanding Our Members’ Relationship with Physical Activity

What supports people with Axial Spondyloarthritis to do physical activity?

What hinders them?

Lauren Angelil (physiotherapist, health coach and vice-chairperson of Axial Spondyloarthritis Association South Africa, pictured left) is asking these questions.
She’s doing her masters in Physiotherapy with a specialisation in Behavioural Medicine. She’s interested in the psychology of putting health information into practice.

The axSpA challenge we’re seeing

When diagnosed with axSpA, the gold standard to manage the condition is medication, physical activity, and education.

But few patients with axSpA meet the general exercise recommendations (Haglund
et al., 2012 1 ), and few perform vigorous aerobic physical activity ( 2 Fongen, et al.,
2013).

The question is – what happens with physical activity?

The unique benefits of physical activity in axSpA

The benefits of physical activity on health and wellbeing in axSpA are significant. It is one of the cornerstones of disease management. The reasons are as follows:
● It positively impacts pain experience, spinal mobility, physical function,
and cardiovascular health
● High intensity exercise is well tolerated and associated with reduced
axSpA disease activity
But, there is a mismatch between the recommendation and the action.

The additional axSpA challenge

Getting started and keeping up with these physical activity guidelines is a challenge.
What’s more, following an exercise plan without axSpA is known to be hard.  Having a disease affecting your physical and mental health makes it even more difficult.
But, following all the axSpA treatment recommendations can make a huge difference! It’s possible to achieve much lower levels of disease activity or have low levels of disease activity.  The question remains – what happens with physical activity?

Where to from here
We have limited research available to understand what supports or hinders physical activity. What’s more, barriers and facilitators are not only related to disease symptoms. They include psychological state, and environmental and
social support, or the lack thereof.
The research will help us understand the gap between exercise recommendations and action.

What we can all do
I encourage everyone reading this to spark conversations about physical activity in their patient groups.
The World Health Organization (WHO) recommends:

● At least 150-300 minutes of moderate intensity physical activity or 75-150 minutes of vigorous intensity physical activity exercise per week or a combination and

● Two strength training sessions a week

Find out from your members:
1. What do they enjoy about exercise?
2. What are the challenges?
3. Who or what supports them in their exercise?

Encourage members to post about their experiences and hold each other compassionately accountable to their goals.
Exercise can be really challenging – it takes time, effort and it can be uncomfortable. Sparking conversations with an air of curiosity and compassion can go a long way.

If you’re interested in hearing more about the research or sparking conversations, reach out to Lauren at healthcoach@laurenkimwellness.com or find her and the South African Axial Spondyloarthritis Association team on
Facebook.

1 Haglund E, Bergman S, Petersson IF, Jacobsson LT, Strombeck B, Bremander A., Differences in physical activity patterns in patients with spondylarthritis, Arthritis Care Res (Hoboken). 2012;64:1886–1894. 

2 Fongen C, Halvorsen S, Dagfinrud H., High disease activity is related to low levels of physical activity in patients with ankylosing spondylitis, Clin Rheumatol. 2013;32:1719–1725.

This year our World AS Day social media campaign reached 11.5 million and our posts and tweets were engaged with 1.4 million times. Excitingly, that is just from ASIF’s digital channels. The number of people who were exposed to World AS Day messaging is much larger than that, when considering the numbers reached through our members’ social media pages; the pages of our industry partners; and of course, the posts and tweets of people living with axSpA themselves.

More than 33,000 people visited the ASIF website. Our Members’ Symptom Checker Questionnaires in six languages, were the most clicked links on the website. Visitors also read our key messages, downloaded resources; and viewed the social media wall, which pulled together posts and tweets that used #WorldASDay2022.

These are just some of the many messages of support and hope left on the ‘Leave your Footprint’ webpage. Each of the footprints shares a powerful message and has become an inspiring place to visit.

Visit Leave your Footprint

Walk Your AS Off

Participants from 41 countries around the world participated in Walk Your AS Off this year.

The 335 participants in 45 teams walked over 40,000 steps. The event raises awareness each year as people post about their walks on social media – often including their personal story to explain why they are participating in the initiative. It is inspiring to read posts, like the one pictured left, about why people chose to take part.

A lot of the participants have participated in the event for many years. Some raise awareness and funds for their local axSpA organisation while others use it as motivation to get out and move every day during May – hopefully starting a lifelong habit.

More than 3,100 people from 103 countries participated in the virtual Global Spondyloarthritis Summit hosted by the SAA. More than 2,000 of the registrants live with axSpA.

The most watched presentations were: Micah Yu speaking about Arthritis and Nutrition (watched in total 850 times) and Angelo Papachristos’ presentation on Exercise, Physical Activity and Staying Active with SpA, which was viewed 568 times.

The majority of participants were from the US (2,006), with participants also from Canada (205), Australia (90), the UK (85), Bulgaria (81), India (65), Norway (62) and 97 other countries.

ASIF had a virtual stand at which we displayed leaflets from many of our member organisations, of which 170 were downloaded. Our Talk to be Heard videos were the most popular videos viewed 230 times.

It is with great sadness that we announce the passing of Margaret Lewington, physiotherapist of Brisbane, Australia in June.  A true champion of Ankylosing Spondylitis management, treatment and advocacy in the Musculoskeletal (MSK) healthcare and professional community in Australia and Internationally.

Margaret played an integral role in the organisation and operations of the Ankylosing Spondylitis Group of Queensland for over twenty‑five years. In addition to conducting weekly group hydrotherapy sessions for people with ankylosing spondylitis, Margaret played a core role in enhancing the social and education programs of the Group through her input in the newsletters, the organisation of speakers at the seminars conducted by the Group and in the organisation of many of the social activities (e.g., fun walks, dinners etc.).

Marg was influential in establishing the AS Victoria peer support group in 2005 along with Greg Tate, formerly of Brisbane, Ankylosing Spondylitis Group of Queensland and joint editor of Australia’s important national AS newsletter, AStretch.

In addition, Marg has been an AS advocate and activist in the professional MSK community, through active involvement with Arthritis Australia, professional Rheumatology (ARA) and Physiotherapy (APA) societies. Additionally, Marg had long supported the international community, with Axial Spondyloarthritis International Federation patient and clinical networks.

Margaret was well-known and loved among ASIF’s membership, she took an active part in ASIF’s Council Meetings for many years, travelling to United Kingdom, Russia, Bulgaria and Turkey among other countries.  She loved to feel connected to the world-wide community and was so dedicated that, due to the time zone difference, she regularly got up in Australia in the middle of the night to join ASIF’s online meetings and webinars. Margaret was passionate about learning and sharing information and about the international community and how we could all help each other.  In one of her last email to ASIF, she offered to assist us to find a way to connect physiotherapists working in axSpA around the world which we agree is a great idea.  Margaret will be sorely missed.

Graham Collins (AS QLD), Annie McPherson (AS Victoria) & Jo Davies (ASIF)

     

ASIF is delighted and honoured to welcome Maranda van Dam from South Africa, to the ASIF Board.

Maranda understands only too well the impact axSpA can have. In 2008 Maranda began experiencing symptoms; however, it took her almost 8.5 years of dead ends and frustration before she finally got a diagnosis.

Knowing that she didn’t want others to go through what she did without support, two years later, Maranda set up the Axial Spondyloarthritis Association of South Africa (ASASA). The organisation began as a Facebook group that reached out to people living with axSpA. Four years on, the private Facebook group has become a vibrant community with 243 members who ask advice, post information and share experiences. Maranda says that the most important role of the Facebook group is to be a safe place where AS survivors, as she calls them, can be themselves. ASASA now has a newsletter and anticipates growing at around 50 members per year.

Shockingly, South Africa has just 85 rheumatologists for a population of 60 million people. This is one reason why ASASA is so important, as for many people living with axSpA, seeing a rheumatologist is a once in a lifetime experience.

Maranda is passionate about advocating for people living with axSpA and sees the value in working as a global community.

Over the last few years Maranda has been increasingly involved in ASIF’s work, sitting on sub-committees and providing input into key projects.

A unanimous vote at the ASIF Council Meeting in Copenhagen on 31 May 2022, secured her place on the ASIF Board.

Maranda commented, “Giving a voice to a silent disease, has changed my life forever.”

As well as her work with ASASA and ASIF, Maranda is a successful business owner and a single parent to two wonderful boys. She enjoys an active lifestyle that includes riding her mountain bike, playing tennis and Pilates. Early in 2022, she completed a gruelling trip with her motorbike for 3 weeks in the Himalayas.

Maranda’s enthusiasm for life is contagious and she will not let her axSpA stop her from achieving her dreams.

See our full ASIF Board

 

ASIF was delighted to welcome representatives from 23 of our member organisations to our Council Meeting between 29 and 31 May in Copenhagen, Denmark. The opportunity to meet face to face after the pandemic was embraced by nearly 40 representatives from 23 organisations.

The wonders of technology allowed an additional five representatives from two other members to participate in the meeting remotely. We also opened few sessions to our corporate partners so they could understand more about ASIF, its members and what we do.

A full report will follow, but for now here is just a snapshot…

Many of our members created posters exhibiting their work, these were displayed around the meeting room, and can be see below.

Nine of our members presented their posters and explained how their organisations support people living with axSpA and work to improve the lives of those affected. Here are just a few of the many highlights from those sessions:

Thank you to Merian Bastrup Clasen from the Association for Spinal Arthritis and Morbus Bechterew in Denmark for her help and support with the Council Meeting.

Lillann Wermskog and Lise Mette Eidet from Spafo Norge shared beautifully created patient videos that they are using to raise awareness.

Presenting with the South African flag draped around her shoulders, Maranda van Dam from Axial Spondyloarthritis Association of South Africa shocked the room with the reality of the number of rheumatologists in South Africa – just 85 for a population of 60 million.

Iryna Bublyk brought us to tears with the reality facing Ankylosis.net and the people living with axSpA in Ukraine.

Wearing traditional Filipino shirts, Clark Ferrer, Percival Escarda and Jose Rivas from Ankylosing Spondylitis Association of the Philippines, presented the work they are doing and the challenges they face working in an archipelago of over 7,000 islands.

Raj Mahapatra, an ASIF Trustee, provided an update on ASIF’s Delay to Diagnosis project, and the project was later the subject of discussion in the workshop sessions. We value the input that we gained and are using it to help direct the next phase of the project.

This year’s World AS Day campaign reached 11.5 million people on social media through ASIF’s channels alone – this doesn’t take into account the numbers reached through our members’ social channels. It is exciting to see how much awareness the campaign is raising each year.

The first insights into the IMAS Global Dataset were presented by Professor Marco Garrido Cumbrera. The data provides a valuable augmentation of the European results.  The data currently being analysed comes from people living with axSpA across five continents and increases the number of respondents to the survey to 5,325.  Since the Council Meeting, the Indian survey has closed with 230 people having participated. The final number of participants globally is 5,555. The results will be analysed and presented later in the year.

Professor Denis Poddubnyy shared the latest updates in Spondyloarthritis, including some of the most recent global research.  We also heard about the ASAS classification criteria for axSpA and new treatment recommendations.  Doctor Victoria Navarro-Compán provided an update on ASAS’ work and collaboration opportunities. There is certainly an appetite to work more closely with ASAS.

Click on the links below to watch their presentations.

Stalo Papamichael from CYLPER the Cyprus League of People with Rheumatism updated on the various activities of the organisation.

Martina Irrang presented the work of DVMB the Deutsche Vereinigung Morbus Bechterew e.V. Bundesverband.

The challenges of reaching patients across Greece was illustrated by Nadia Malliou from ELEANA the Hellenic League Against Rheumatism.

Attendees listened to Dr Dale Webb from NASS present the Gold Standard project. This ambitious project aims to reduce the national delay in diagnosis in the UK from 8.5 years to 1 year.

The Schweizerische Vereinigung Morbus Bechterew in Switzerland was introduced by René Bräm who highlighted his organisation’s pillars and recent activities. He included a photo from one of the first ASIF Council Meetings in 1989.

Moataz Daoud spoke on behalf of the Canadian Spondylitis Association (CSA), sharing their goal for axSpA patients.

Julieth Samantha Buitrago described the reality of the Fundación de Espondilitis Anquilosante en Colombia and generously gave each of the participants a traditional Colombian poncho.

Look out for our full Council Meeting Report coming soon!

Watch Professor Denis Poddubnyy’s Presentation

Watch Doctor Victoria Navarro-Compán’s Presentation

To view the Member’s Posters click here

The potential to treat axSpA via the gut microbiome

 

Watch Dr Matthew Brown share his research into the link between axSpA and the gut microbiome in our inaugural Member Webinar.

Dr Matthew Brown MBBS MD FRACP FAHMS FAA, is the Director, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London NIHR Biomedical Research Centre, and is pioneering this exciting area of research.

“What a mind-blowing session. Thank you so much for this very interesting webinar”, Maranda van Dam, Axial Spondyloarthritis Association of South Africa.

 

Watch Webinar  here

 

Our new Member Webinar Series will cover topics, including the latest research, fundraising, emerging treatments, membership, advocacy and others.

The webinars will be held every few months and we will vary the day and time to enable as many of our members to attend live. They will be recorded for those who cannot attend the live session. If there are topics that you would like to see covered in future webinars, please contact Joanne at communicationsmanager@asif.info.

To translate this webinar, please contact Joanne.

Information about the next webinar – coming soon!

 

 

ASAS Annual Meeting – Report

Patient representatives from ASIF were invited to attend the ASAS (Assessment of Spondyloarthritis International Society) Annual Meeting, held virtually on 13-15 January, 2022.

ASAS brings together international experts in the field of spondyloarthritis to support and promote the study of axial and peripheral spondyloarthritis, with a mission to increase awareness and early diagnosis of the disease, the development and validation of assessment tools, and the evaluation of treatment modalities in order to promote clinical research with the ultimate goal to improve outcome of the disease.

The annual meeting, in addition to such usual activities as addressing fellowships and grants, membership and news, is a workshop to review current research projects and decide on future courses of action.  The big workshop topics this year were Classification Performance, the SPEAR project and the ASAS Core Set.

There was also a review of ongoing studies and projects. These were:

Y-ASAS, or Young ASAS, an initiative started in 2017 to involve younger (under age 45) members in ASAS and its projects.

CLASSIC (Classification of Axial Spondyloarthritis Inception Cohort) project which aims to test or validate the performance of the current ASAS classification criteria in a prospective cohort of patients.

AXIS, a joint project with GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) to study axSpA in PsA patients and to develop classification criteria and a unified nomenclature for axial involvement in PsA that would allow defining a homogeneous subgroup of patients for research. The project is recruiting 400 patients in 20 countries.

MRImagine, a project that aimed to investigate inter-reader reliability, the extent of detection of lesions, and frequency of cases with a positive MRI for structural lesions when using an “all slice” approach versus the SPARCC scoring of 5 central slices.

Imaging Reporting, a project to develop recommendations for the standardization of communication around imaging for diagnosing and assessing axSpA in clinical practice.

The workshop on SPEAR (a definition of early axSpA project) was to assess how to continue with work on a definition of early axial spondyloarthritis for research purposes. The objectives of the project are to:

First, identify all possible definitions employed in the literature for “early SpA”, including “early axSpA” and “early pSpA”.

Second, to summarize the evidence on the relationship between symptom duration or the presence of radiographic damage and clinical response in patients with axSpA treated with NSAIDs, bDMARDs or tsDMARDs.

Third, to summarize the evidence on the relationship between symptom duration or the presence of radiographic damage and burden of disease at the moment of diagnosis in b/ts/dMARD-naïve patients.

The project’s working group has reviewed a few hundred publications, including studies, for a definition of early axSpA. About 60% of the studies had a specific definition. However, the definitions used varied between using mainly symptom duration and disease duration. As the workshop saw, coming up with a definition is not an easy task, but based on the working group’s review, it recommended using symptom duration as the basis of an early axSpA definition for research purposes. The project is also looking at the possible benefit of early versus delayed treatment.

The Classification performance workshop looked at the challenges to the ASAS Classification Criteria and the evidence for their validity and applicability compared to the rheumatologist’s diagnosis.

The ASAS Core Set workshop addressed an update to the ASAS-OMERACT (Outcomes in Rheumatology) core outcome set for Ankylosing Spondylitis into the ASAS-OMERACT core outcome set for axial spondyloarthritis (axSpA). At this time, 7 domains (pain, physical function, stiffness, disease activity, mobility, overall functioning and health, peripheral manifestations) were selected for the symptom-modifying therapies setting. For the disease-modifying therapies setting, 6 domains (physical function, disease activity, mobility, structural damage, extra musculoskeletal manifestations, peripheral manifestations) were selected.

 

Thank you to Michael Mallinson for this report

New global Steering Group

The launch of our Delay to Diagnosis Global report last summer was a significant milestone for ASIF.  The report was well received and we managed to spread the message far and wide; we presented the report at EULAR, at the Indian Rheumatology Conference, recorded a podcast about it and had an article in the Irish Medical Times.  But, we need to get the message to policymakers, healthcare leaders and anyone with a role in axSpA diagnosis and treatment.

 

And so, now we are moving the project onto this crucial next stage.  We are delighted to announce that a new global Steering Group has been formed to help us decide the strategic direction of the project and how best to tackle the barriers we identified in the report.  The Steering Group is made up of ASIF members and people living with axSpA, world-leading axSpA healthcare professionals and patient advocacy and public affairs experts.

 

Our first meeting was held on 3 March; it was a lively affair, with lots of discussion and engagement from everyone on the group.  We discussed which barriers are most urgent to tackle and where we might have the most impact on the diagnostic delay.  Broadly, the group felt that awareness of the disease for those with symptoms, the general population and in primary healthcare, were crucial to reducing the delay.  We are now working to develop these ideas further.  Look out for our presentation at the ASIF Council Meeting, where there will also be an opportunity for all our members to share their thoughts on how the project can benefit your organisations.

 

Read the Delay to Diagnosis Report

Find out more about the Delay to Diagnosis campaign

 

 

Eular Pare Podcast

Listen to the Podcast featuring our Delay to Diagnosis project on:

Spotify: https://t.co/4GhYeS4DxF

iTunes: https://t.co/ei2400USmE

 

The podcast features ASIF’s Jo Davies and Jo Lowe, who talk with Peter Boyd about our Delay to Diagnosis project and report.

 

Thank you to everyone who voted for the ASIF Poster at the PARE Best Practice Fair. Our prize was to be featured in the Podcast! We hope you enjoy listening!

 

Thank you Eular PARE!

 

Read the Delay to Diagnosis Report

 

We were delighted to see so many friends at the ASIF Virtual Council Meeting on 11 September. Jo Davies, Executive to the Board, welcomed everyone and introduced ASIF’s President, Zhivko Yankov. Zhivko’s presentation highlighted the work that ASIF had completed over the last year Joanne de Bry, Communications Manager, welcomed ASIF’s newest members who proceeded to introduce themselves by video and shared a little about their organisations. Click here to watch the video (https://vimeo.com/657813167).

ASIF’s Treasurer, Thierry Vannier presented the 2020 Report and Accounts. As ASIF’s income has grown, it has been necessary to engage with an auditor/accountant with specialist knowledge of UK charity accounting and law. The members voted and approved the appointment of John Gordon as the Independent Examiner of ASIF’s accounts in 2022. Justino Romao was thanked for his many years as ASIF’s auditor.

Yuki Zeniya stepped down as Trustee and was thanked for his contribution to ASIF. We are starting a campaign to recruit more Trustees in the next few years – please see below

Jo Lowe Project Manager, Lillann Wermskog, Spafo Norge and Wendy Gerhart, CSA, provided an update on ASIF’s projects.

We were delighted to see so many members at the meeting, but know that nothing really compares to meeting face to face. We hope that 2022 will allow us to do that – we will look at hybrid options if travel remains a problem for members