Scandinavian Rheumatology Congress (SRC) Features Key IMAS Findings

 

Scandinavian Rheumatology Congress (SRC) Features Key IMAS Findings

For patients living with axSpA, the burden of the disease can impact all areas of their life.  The survey results from the International Map of Axial Spondyloarthritis (IMAS) demonstrate the varied ways that people are impacted by this disease.  IMAS brings together researchers, rheumatologists and patient organisations to deliver evidence of the disease burden, ensuring that the patient perspective is better understood.

This September, IMAS was once again present at a major rheumatology congress to present findings from the initial European phase of the project.  Alongside IMAS partner, Spondylitis Association of Norway, we presented four posters at the Scandinavian Rheumatology Congress (SRC) 2021.  These explored the following different disease burdens.

One third of axSpA patients reported an inability to work or a recognised disability.  One poster explores the factors associated with these situations and concludes that early access to effective treatments and flexible working environments are essential to keeping active and continuing to work.

A number of different factors are associated with physical activity, which is an essential part of axSpA self-care.  Another poster emphasises the benefits of activity on disease management and mental health – as well as the factors associated with increased activity.  The role of patient organisations in enhancing access to physical activity is also highlighted.

The impact of axSpA on Spanish patients’ close relationships was the theme of a third poster with almost 58% of people reporting a high functional limitation in intimate relationships and a decrease in sexual activity.  Over 80% of people reported worsening relationships with their spouse.  One conclusion is that healthcare providers can play a key role by improving communication about intimate relationships with patients and giving access to counselling on a healthy sex life.

The final poster explores gender differences in Norwegian axSpA patients.  The different healthcare professionals visited by men and women on the path to diagnosis is examined.  We also look at the differences in the way the genders experience symptoms of the disease, including spinal stiffness in different areas of the spine, functional limitation and which body areas are affected by inflammation.  Although time from symptom onset to diagnosis has been reduced for female patients, their diagnostic delay is still longer.

As well as the poster presentations, the data on fatigue from the European results were presented by the IMAS founder, Dr Marco Garrido-Cumbrera.  The presentation explored the key factors associated with fatigue, showing poorer mental health and sleep disorders as the most common factors.  Almost 80% of patients experienced severe fatigue with France and Belgium having the highest prevalence.

The IMAS objective is to ensure that the axSpA patient perspective is integrated into health policy and clinical decision-making.  By presenting IMAS data at rheumatology congresses worldwide, we continue to highlight the patient perspective, engage clinicians who directly provide treatment to patients and keep the care of people living with axSpA in the spotlight.

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