Read the report on our new IMAS webpages, where you can discover the results from survey participants in 27 countries, shining a light on the burden of living with axSpA. The report includes calls to action for healthcare professionals and policymakers, which target better public and professional understanding of axSpA, so that people with symptoms get an accurate diagnosis with minimal delay and the ongoing support and care they need.
Webinar, 13 March
To showcase the report and discuss what the evidence and calls to action mean for patients and patient organisations, we are holding a webinar on 13 March (12:00 to 13:30 GMT). As well as highlighting some of the key results from the report, we will hear clinician and patient organisation perspectives on how IMAS can be used as a tool for change. Please email Jo Lowe to confirm your attendance.
Spotlight on IMAS event, 11 June
A celebratory event will take place in Vienna, the evening before the EULAR congress commences. The event, on Tuesday 11 June (18:30-21:30 CET), will bring together our members, industry partners, rheumatologists, HCPs, and other key stakeholders. It will be an opportunity to celebrate the success of IMAS so far, its transition to ASIF and the patient community; and to share our plans for the future. Please contact Jo Lowe to secure your place.
On 15 November, Mike Mandelbaum and Jo Davies from ASIF attended Galapagos’ first ever Patient Partnership Day at their Head Office in Mechelen, Belgium. The one-day event was attended by representatives from around 30 patient organisations mostly representing RMDs, and many Galapagos employees from around the world.
Jo Davies from ASIF and Antonella Celano from APMARR
On 15 November, Mike Mandelbaum and Jo Davies from ASIF attended Galapagos’ first ever Patient Partnership Day at their Head Office in Mechelen, Belgium. The one-day event was attended by representatives from around 30 patient organisations mostly representing RMDs, and many Galapagos employees from around the world.
The aim of the day was to share ideas about what good patient engagement (PE) is.
Patient engagement is maturing. Patients are rightly becoming more important in research and with policy makers and pharmaceutical companies.
There were sessions covering best practice, the importance of shared decision-making in clinical trial settings. There was also an opportunity to take part in workshops in patient engagement and communications and health literacy. The day ended with a poster session and dinner. ASIF members were also present, including Antonella Celano from APMARR and Andri Phoka from Cyplar, EULAR PARE, Agora and an ASIF Trustee.
ASIF Members from around the world will gather in Columbia in October for our annual Council Meeting.
IMAS will feature as a central theme throughout the meeting. Presentations, discussions and workshops will include raising awareness among healthcare professionals, emerging therapies and research, and how our members can use IMAS to facilitate their work. One of the most anticipated sessions will be an opportunity for our members to present their organisations, campaigns and work. Importantly, delegates will have time to network, share ideas, build new relationships and create opportunities for collaboration.
Invitations have been sent and we look forward to assisting delegates with their attendance. Please contact Jo Davies (office@asif.info) with questions about the Council Meeting.
ASIF is delighted to offer our members the opportunity to apply for a £500 World AS Day (WASD) Social Media Grant. The grant is to be used exclusively for boosting WASD social media posts and ads.
In previous years ASIF has boosted WASD posts to countries where our members operate, however the posts have linked back to our website. We believe it would be more beneficial to people living with axSpA in those countries if the content was boosted on our members’ channels and linked directly to their websites.
We understand that many of our members do not have the funding available for social media. We hope these six £500 grants enable members to raise awareness with more people during the WASD campaign period.
Over recent years the algorithms used by the main social media platforms (Facebook, Instagram, X (formally Twitter) and Linked In) have made it increasingly difficult to reach significant numbers of people through organic (non-boosted) posts. Paid campaigns ensure that content is seen by more people and can be targeted to specific audiences.
Eligibility: The organisation must be a member of ASIF.
Number of grants available: 6
Support: ASIF will run a webinar demonstrating how to boost posts and create ads, and use analytics to measure performance. It will also cover how to target specific audiences across each of the social media platforms listed above. All members are welcome to attend the webinar, regardless of whether they are a grant recipient or not.
We understand that managing social media can feel overwhelming with all the different platforms and options, which is why we can arrange additional one-to-one or small-group sessions following the webinar.
Post-WASD: It is a condition of the grant that the recipient provides feedback on the results of the boosting/ad campaign in terms of number of people reached and engagement levels etc. Details of the information required will be provided to the grant recipient prior to WASD. The report is not intended to be onerous, it will simply provide important feedback on the success of the campaign. This feedback will help to create a picture of the global impact WASD has and will help inform the decision to provide future grants.
For more information or to arrange a short video call before applying please contact us.
Obligations of grant recipient:
When confirmation of the grant is provided to the organisation:
Sign the agreement
Provide bank account details
The grant recipient agrees to:
Spend the grant exclusively on paid social media – the grant must not be spent on staffing or other costs
By 8 June 2024:
To complete the evaluation form provided by ASIF, detailing how the grant was spent and its impact
To provide receipts to evidence the spend
To return any unused portion of the grant to ASIF
Decision Making Process
Applications will be considered by the ASIF team and endorsed by the Trustee Board, who work to the Charity Commission C27 guidelines on trustee decision making.
Grants are awarded entirely at the discretion of the trustees and their decision is final.
Criteria
The Trustees will consider the applications based on:
Size of organisation (preference will be given to organisations with limited financial resources)
Current social media presence (preference will be given to organisations that have an existing social media presence – even if it is small)
The response in the application form to the question: How would your organisation use the grant to boost your social media activity in support of the World AS Day campaign?
Successful applicants will be informed by 31 January.
The World AS Day social media assets have been created, the animations are ready, the webpage is live, and the Toolkit is ready for download!
It was great to see so many of our members and industry partners at our World AS Day Webinar on 6 February. If you missed it, you can watch the recording here. During the webinar, we explored the social media campaign, demonstrated how the social media assets can be tailored to local audiences, and previewed the animations.
The social media content calendar has now been added to the Toolkit. All the materials are available to download from the webpage.
Tell us about your event! Complete the online form and we’ll add your event to the World AS Day webpage and post about it on our social media channels.
Did you know we have a set of three new infographics, which help to support people living with axSpA? The resources aim to inform people how disease activity is typically measured; support them in building a partnership with their doctor; and assist them in focussing on their personal and lifestyle goals.
The first of these is an infographic that helps to educate patients on the commonly-used disease activity assessments, ASDAS and BASDAI. As well as the tools themselves and the interpretation of the different scores, it also describes how inflammation is measured.
Recognising that disease activity scores often do not tell the full story, the second resource provides guidance on discussing other measures of wellbeing with doctors. It provides helpful tips on other areas of life that could be useful to talk about.
The third resource gives advice and support on setting personal goals. It provides guidance on how to consider, set and monitor lifestyle goals that can help to motivate and bring meaningful improvements to wellbeing and quality of life.
The set of infographics have been developed to encourage people and give them more confidence in discussing their disease with their doctor. You may also find that they are a useful resource for the rheumatologists in your network to give to their patients. Please let us know if you think healthcare professionals would find them useful or if you decide to share them in this way.
There is an opportunity to translate the infographics for our members; please contact Jo Lowe (projectmanager@asif.info) to find out more.
Mike Mandelbaum and Jo Davies from ASIF attended the EULAR PARE 2023 Conference in Brussels on 16 and 17 November. This year’s conference was mostly about implementing the EULAR Manifesto Campaign, an advocacy campaign outlining RMD-related policy asks. The manifesto focuses on influencing three policy areas:
Quality of care: improving RMD prevention, early diagnosis, treatment, and rehabilitation interventions.
Mike presenting the ASIF poster
Social Policy: mitigating the burden of RMDs on health-related quality of life, education, and employment.
Research and innovation: developing better RMD prevention and treatment strategies.
The campaign is largely focussed right now on influencing European Parliament. However, the manifesto will have resonance with all of us and it is a document that could be adapted to suit other countries.
Everyone who attended EULAR PARE also took part in the Best Practice Fair. Forty posters were presented; Mike presented an ASIF poster on IMAS (pictured above). It was wonderful to see the work that other organisations are doing. There were a number of ASIF members at the event.
ASIF has recently gained six new members from Aruba, Brazil, Montenegro, Pakistan, Panama and The Netherlands. We are delighted to introduce Gruparj Petrópolis Institute from Brazil and Arthritis Care Foundation from Pakistan below.
Gruparj Petrópolis Institute, Brazil
Written by Wanda Heloisa Ferreira
“Gruparj Petrópolis Institute completes 22 years of fulfilling its mission: to educate and mobilise society towards the importance of prevention, diagnosis, treatment and early rehabilitation of rheumatic diseases, through health education.”
The Arthritic Patients Group of Rio de Janeiro in Petrópolis – Instituto Gruparj Petrópolis was founded in 2001 with the support of the Rheumatology Society of Rio de Janeiro. In 199 the society held the first Forum for Laymen on Rheumatism in Rio de Janeiro. At the time, rheumatologists observed the population’s lack of knowledge about rheumatic diseases. Since then, Gruparj has worked to meet the needs and interests of people with rheumatic diseases, especially Rheumatoid Arthritis and Spondyloarthritis.
The purpose of the institution is to promote social assistance through information, education and support for people with rheumatic and related diseases; enable and rehabilitate people with functional limitations for the job market; promote patient integration into society; and offer multidisciplinary care to people with rheumatic diseases.
Achievements in Numbers
These numbers are not just statistics; they are tangible testimonies of our positive impact and ongoing commitment to a future with a higher quality of life for people with rheumatic diseases.
2,100 members: A solid community that continues to grow, strengthening connections and collaborations.
10 thousand services per year: Commitment to support, resources and opportunities for our community.
30 thousand people reached: Extending our influence beyond borders, serving not only members, but the community in general.
53 Health Education Courses on Rheumatic Diseases carried out: providing knowledge about treatment, specificities of rheumatic diseases and quality of life for people with rheumatic pathologies across the country.
Comprehensive and Interdisciplinary Service
What makes Instituto Gruparj Petrópolis truly special are its comprehensive activities and services, designed to optimise the physical, emotional and social rehabilitation of people with rheumatic diseases. Our main activities are: lectures, congresses, occupational rehabilitation workshops including through painting and crafts, medical and psychological care and rehabilitation. To achieve this, we count on the effective collaboration of doctors, physiotherapists, occupational and body therapists, psychologists, nutritionists, art therapists, who develop interdisciplinary work, taking into account programming that optimises the physical, emotional and social rehabilitation of people with rheumatic diseases.
Comprehensive and Innovative Support
Multidisciplinary service
Patients meditating
Instituto Gruparj offers medical, psychological, physiotherapeutic, nutritional care, among others, aiming to optimise the physical, emotional and social rehabilitation of patients.
Therapeutic Support – Weekly consultations with a rheumatologist and nutritionist.
Physiotherapy Support – Highlight is the stretching services, offering not only targeted exercises, but also a recreational moment for patients.
Psychological Support – A fundament
al pillar, with group and individual services.
Rehabilitation through Art: Art and Life Project – The project uses art as a means of physical, emotional and social rehabilitation, with weekly workshops.
Educational Events and Awareness Campaigns
The Institute promotes educational events such as lectures, congresses and occupational rehabilitation workshops through art, such as painting and crafts.
A highlight is the Social Medical Meeting on Rheumatic Diseases, bringing together approximately 450 participants annually. In addition, 53 Health Education courses have already been held in Brazil and Portugal.
Awareness campaigns
The social responsibility of Instituto Gruparj Petrópolis is evident in its annual awareness campaigns, open to the community. Annually, the Institute promotes campaigns open to the community on Hepatitis, Osteoporosis, Rheumatoid Arthritis, Lupus, Psoriatic Arthritis and Ankylosing Spondylitis, among others.
Financial Strategy
The institution remains resilient through financial strategies, mobilising resources and seeking support from foundations, companies, the public sector, individual donors, donation campaigns and events, as well as participation in public notices.
In its 22-year journey, the Gruparj Petrópolis Institute has fulfilled its mission, and exceeded expectations, becoming an institution that promotes hope and support for those facing rheumatic diseases. Its trajectory is an inspiration to everyone, highlighting that, with commitment and innovation, we can truly transform lives and communities.
Arthritis Care Foundation (ACF) became a registered trust in 2010 for the welfare of patients with rheumatic diseases in Pakistan. It is the only non-for-profit organisation in Pakistan, striving to provide free and subsidised treatment to less privileged patients from all walks of life. In 2010, three founding members started volunteer services. As of today, eight volunteer rheumatologists and twelve doctors on ACF’s payroll provide services at ACF Centre and five collaborative projects.
Patients’ Care: ACF provides medications (including biologics), diagnostic support and joint replacements for indigent arthritis patients. Apart from patient care, supporting rheumatology fellowship training programmes and arranging awareness seminars are our main objectives. Since inception, PKR 382 million (USD 2.3 million) has been spent on providing free and subsidised treatment to thousands of arthritis patients.
Prof. Nighat Mir examining a patient who lives with rheumatoid arthritis
Each year ACF spends approximately PKR 17,500,000 (USD 61,000) and PKR 20,000,000 (USD 72,500) on provision of biologics and JAK-inhibitor drugs respectively; a significant portion of which is being used for treatment of SpA patients and SLE patients.
In a less developed country like Pakistan, the cost of treating rheumatic diseases is very high, there is little support from the public sector and no health insurance facilities. The Sehat Sahulat Card scheme, recently launched by the government, covers outpatient treatment but does not support full treatment, which leads to many patients suffering poor outcomes and delayed diagnostics.
Teaching and Training: Despite international standards recommending at least 2500 rheumatologists for a population of more than 240 million, Pakistan only has 125 qualified registered rheumatologists. To meet the dire need of specialists, ACF started scholarship support for teaching and training programmes in collaboration with various teaching institutions.
So far 31 rheumatologists have been trained by the ACF Faculty, covering more than 50% of total practising rheumatologists in Punjab province of 120 million. Out of these, 21 specialists have fully or partially been trained through the ACF scholarship programme. ACF funded rheumatologists are not only working in the public and private sector of Pakistan but they are also serving abroad (UK and Middle East). So far around PKR 42 million (USD 2.39 million) has been spent on a scholarship programme for fellows undergoing training.
Education and Research Activities: ACF is consolidating its research endeavours in collaboration with renowned national and international teaching and research institutions. Partnering with the Fatima Jinnah Medical University (FJMU) and National Institute of Health (NIH) USA, ACF is conducting research involving the genetics of lupus in patients and their families. ACF faculty recently conducted research on prevalence of musculoskeletal disorders through a grant by WHO. The ACF team also organised a nine months educational programme for family physicians, covering rigorous modules, with the help of ILAR funding. ACF has set up a support group for ankylosing spondylitis and lupus patients (pictured). Expert rheumatologists and psychologists provided their expert opinions to all registered patients and families in the support group.
Advocacy programmes: ACF team has been actively involved in raising awareness among the general public, physicians and medical students through educational seminars, walks, interviews and public relationship activities. This is part of the ACF commitment towards public awareness about these diseases.
“The partnership you develop with your doctor will be very important” – Percival, person living with axSpA in the Philippines
Building a partnership with a doctor can help people get the most out of their axSpA treatment.
A new ASIF infographic highlights how people living with axSpA can help to guide decisions about their healthcare and what that can look like in practice.
This is part of a series of three infographics to support people living with axSpA better understand how their disease is assessed and how they can make the most of consultations with their doctor.
ASIF’s members are encouraged to share the infographics with their axSpA communities
If you would like a translation of them, please contact Jo Lowe.
The first two infographics are available on our resources pages here.
This series of infographics is a collaboration between ASIF and UCB.
It is becoming clearer that depression and anxiety are prominent among people living with axSpA
The European Map of Axial Spondyloarthritis (EMAS) and the International Map of Axial Spondyloarthritis (IMAS) describe how people living with axSpA experience their disease physically, psychologically and socially. Results show long diagnostic delays and a substantial physical and psychological burden, indicating important unmet needs for patients. Furthermore, axSpA can restrict their ability to participate in their daily routine and lead a productive work life. Understanding the patient’s perspective can improve both health outcomes and enhance shared decision-making between patients and rheumatologists.
The two most common comorbidities of axSpA are hypertension and depression. According to research, patients who exhibit symptoms in the depression-anxiety cluster and/or fibromyalgia-IBS cluster report poorer health and increased axSpA severity. Sleep disorders, anxiety and depression are common among patients and is associated with higher disease activity and functional impairment. But one more question arises when looking at the interconnection between the two. Does depression also impact treatment outcomes? Can there be a connection between treatment and depressive symptoms? And to what extent?
US patients with axSpA in the IMAS study, reported psychological distress and impaired function. Those participants also reported delays in diagnosis – with most of the delays reported by women. It is becoming clearer that depression and anxiety are prominent among people living with axSpA. This is why healthcare professionals should be screening for them in addition to disease activity, level and localisation of pain.
Chronic diseases can impact personal relationships
It is likely that chronic disease with such a broad impact on daily living would also impact interpersonal relationships. Partners are often a main source of support, and they can also be affected by the chronic disease and experience emotional distress themselves. The impact of axSpA on partner relationships is yet to be further researched. A UK study used telephone interviews from people cohabiting with their partner who lives with axSpA. The findings illustrated how living with the disease can influence closeness between partners and dominate daily decisions, particularly surrounding leisure activities. Partners commonly adopted a carer-type role, despite many individuals with axSpA expressing desire for a greater sense of autonomy. This was a unique insight into the lived experiences of both individuals with axSpA and their partners. Findings highlighted the social context of managing a long-term condition and suggested the need for including partners within consultations, and the need for support provision for partners.
Sexual quality of life may be considered a topic lower in the research priorities or in a patient’s life concerns. But this is not the case. There is an ongoing discussion about the relationship between demographics, disease-related variables, treatment, and sexual quality of life (SQOL) in men and women with axSpA. Data suggest that inflammation in patients with axSpA, even in the biologic treatment era, reduces sexual quality of life. On a more specific aspect of sexual quality of life, researchers explored the impact of ankylosing spondylitis (AS) on the sexual relationships of a large cohort of patients across the UK on a total of 1000 patients. They found that AS has a substantial impact on patients’ sexual relationships. One significant finding was that management of AS and its impact on sexual relationships should be directed not only towards physical outcomes such as disease activity and physical function, but also take into consideration the psychological state of the patient.
While reading about the psychological burden of axSpA on the daily lives of patients one can see the link between disease activity, and/or severity, functional limitations, and the presence of mental health issues. The underlying mechanism of disease activity includes chronic pain which cannot be overlooked when discussing the burden of this disease.
Chronic pain leads to a vicious cycle where dysfunctional cognitive schemas (thoughts, core beliefs) and behaviours (attitudes) are used to manage and deal with pain in the activities of daily living (ADL). The basic barriers of managing chronic pain are catastrophizing and fear/avoidance behaviours. When a patient is catastrophizing, basically focusing on thoughts and/or reactions that ‘magnify’ the experience of pain there is an increased likelihood of experiencing depressive and/or anxiety symptoms, greater functional difficulty, or disability. In those cases, patients experience lower quality of life, lower levels of perceived control over pain, lower emotional and social functioning, and poorer response to pharmacological treatments. All these make pain management more difficult. Catastrophizing precedes fear and avoidance behaviours towards pain. In this state, patients are faced with a fear of further injury or the possibility of worsening the medical condition, an increased sense (self-report) of pain and disability, and tend to adopt passive or avoidant strategies and behaviours towards pain.
Interventions
Some well-known interventions to manage the psychological burden of axSpA are Cognitive Behavioural Therapy (CBT) that targets dysfunctional thoughts and behaviours towards pain and functional limitations. Acceptance and Commitment Therapy (ACT) is based on the psychological flexibility model and focuses on acceptance of pain and disability and all related thoughts. Operant-Behavioural Therapy focuses on eliminating dysfunctional behaviours and adopting adaptive responses to pain and disability. Changes occur through the reinforcement (positive or negative) of the links between the ‘threat’ of pain and the physical response
Another intervention is mindfulness-based stress reduction that focuses on teaching self-management through meditation and the practice of daily mindfulness. This aims to increase the patient’s awareness of their body state (e.g. muscle tone, breathing) and, at the same time, develop mindfulness activities. These are some of the available interventions focused on helping patients to be more self-aware and empowered to manage their disease and the burden of it on the activities of their daily living.
Patient organisations can play a vital role in providing support to people living with axSpA
Many patient organisations focus on the empowerment of patients, education and support. This is outlined in the European Patient’s Forum Value of Patient Organisations where it’s stated that “the role patient organisations play in the area of peer support consists of providing knowledge, sharing experiences, and offering emotional, social or practical help to individual patients. It can take several forms such as mentoring, counselling or listening.”
Α feasibility study for developing, implementing and evaluating a peer support intervention for people who were newly diagnosed with early inflammatory arthritis (EIA) showed that early peer support was feasible and well received by both mentors and mentees. In another project, called the iPeer2Peer Program showed that peer support can positively influence the patients’ experiences with a chronic disease. Counselling, peer support and mentorship are important services that patient organisations can provide to their members. Support to members can vary from one organisation to another and from one country to another.
Best practices can be shared and resources and experience from organisations which have already implemented peer support and counselling is of high importance. Psychological support through face-to-face interactions, via group sessions or by using social media platforms should always follow guidelines and be delivered by trained professionals and/or supervised volunteers. Mentors or peer counsellors are often impactful for patients living with a chronic disease given that they can share words of encouragement and support with the unique perspective of the lived experience. In principle, organisations that do not already have experience with offering such support to their members can always network with others that do and share and exchange knowledge and best practices.
Patients living with axSpA manage the difficult realities of a chronic disease, the impact of the diagnostic delays, and medication and treatments, as well as the psychological burden of the disease. Patient organisations can play a vital role in providing support to people living with axSpA.
Nadia Maliou is a MSc Cognitive Psychologist, Vice President of the Hellenic League Against Rheumatism ELEANA, Vice President of the Federation Rare Diseases Greece and a Board Member of Pain Alliance Europe.
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“Gruparj Petrópolis Institute completes 22 years of fulfilling its mission: to educate and mobilise society towards the importance of prevention, diagnosis, treatment and early rehabilitation of rheumatic diseases, through health education.”
Arthritis Care Foundation (ACF) became a registered trust in 2010 for the welfare of patients with rheumatic diseases in Pakistan. It is the only non-for-profit organisation in Pakistan, striving to provide free and subsidised treatment to less privileged patients from all walks of life. In 2010, three founding members started volunteer services. As of today, eight volunteer rheumatologists and twelve doctors on ACF’s payroll provide services at ACF Centre and five collaborative projects.
