“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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Our new Delay to Diagnosis materials will help raise awareness of the key signs and symptoms of axSpA; and the devastating effects of the diagnostic delay.
Three powerful short films, translated into nine languages, and an infographic on the diagnostic delay, including the physical, psychological and socio-economic impacts, will support our members in their advocacy and awareness raising efforts.
These materials are available in a toolkit alongside key messages and suggestions for social media content. The resources have not been designed for a specific timescale or timed campaign and so can be used at any time.
On 12 September 2023ASIF will host two webinars to introduce the materials to our members. To register for the webinar, please email Jo Lowe.
The three main videos will be available on our website on September 12th and Jo will be able to give access to the full toolkits in different languages on request.
Thank you to Dr Raj Sengupta for providing his expert opinion, and to Tseleng, Zhivko, Percival and Jo for their honesty and openness in sharing their personal experiences in these compelling videos.
Rheumatologists from Aruba to Argentina, Pakistan to Panama and so many countries in between spoke to the ASIF team about our work and the impact Patient Organisations make to the lives of people living with axSpA.
During EULAR, some of the world’s leading researchers and rheumatologists discussed the importance of patient centric research and care. We explored our priorities with our industry partners and how, by strengthening our relationships, we can develop projects that our members can use to change lives.
We will share a report on EULAR soon.
AiArthritis’ Go With Us to EULAR 2023 Live Debrief
Saturday, Jun 17, 2023 on Facebook at 12:00 pm EST / 9:00 am PST (USA).
Click here to attend the debrief live or find out how to watch it on demand.
The National Axial Spondyloarthritis Society (NASS) in the United Kingdom recently launched Your SpAce, which has been created in partnership with people living with axSpA and healthcare professionals.
Your SpAce allows people living with axSpA to engage with their condition, learn more about axSpA, and build skills to manage the impact it has on their life.
The programme is free to access on the NASS website and YouTube channel. It includes co-produced, short informative videos on topics such as pain, fatigue and flares. There are downloadable resources in each topic, so people living with axSpA can create their own personalised toolkit.
Your SpAce provides a community for people who are at the start of their axSpA journey or who are struggling and feeling isolated. Building a supportive community through monthly online meetups, which provide a relaxed way to connect with others living with axSpA, share ideas and get support. Embedded in the topics are videos of people with axSpA sharing their experiences.
The first in a set of infographics, aimed at preparing and supporting people for appointments with their doctors, is available on our website.
It explains how disease activity is measured, particularly through the BASDAI and ASDAS, as well as other assessments that may be done.
Future infographics will focus on what types of treatment targets are important to patients and addressing barriers to shared decision making. Please let us know if you would like the infographic translated.
Next month ASIF will launch its International Map of Axial Spondyloarthritis (IMAS) report, The burden of axial spondyloarthritis: a global patient perspective. The report demonstrates the challenges of living with axSpA – from getting a timely diagnosis to the health and socioeconomic impacts. A core aim of IMAS is to incorporate the patient perspective and experience into healthcare policy and into decisions about axSpA care. To support this, the report contains calls to action, aimed at healthcare professionals and policymakers. These include ensuring the needs of axSpA patients are fully understood, that a multidisciplinary approach is taken to care and that healthcare professionals are better equipped to recognise the signs and symptoms of axSpA.
The report will be an invaluable advocacy tool for our members and is an essential read for anyone interested in the impact of axSpA. Using IMAS results, we underline the real-life burden of axSpA on both an individual’s life, and on healthcare utilisation.
In the lead up to the publication of the Report, ASIF continues to spread the word about the reality of living with the disease. Our abstract and presentation at this year’s EULAR congress demonstrated how axSpA can affect almost every area of a person’s life and highlighted numerous unmet needs of those living with the disease.
In November, we presented a poster on the IMAS findings and forthcoming global report at the Galapagos Patient Partnership Day and the EULAR PARE Best Practice Fair. Both events gave ASIF the opportunity to share the IMAS project with other patient organisations and to demonstrate how we can use the evidence gathered through IMAS to advocate for change.
We will continue to disseminate the important results from IMAS; we are busy working with the IMAS scientific committee to prepare five new IMAS abstracts for submission to EULAR 2024.
To coincide with the report publication, new webpages highlighting IMAS’ key findings will be published on the ASIF website, providing a fascinating deep dive into the data. Additional materials, including an advocacy toolkit and infographic showing the key IMAS findings, have also been created to support our members’ work. These resources will be available in January.
