The European results of the International Map of Axial Spondyloarthritis (IMAS) reveal that people living with axial spondyloarthritis (axSpA) – a long-term inflammatory spine condition which is as prevalent as rheumatoid arthritis – face uncertainty and worry for their future, with 74% reporting difficulties finding a job due to the condition. These findings, presented at the Annual European Congress of Rheumatology (EULAR 2019) in Madrid, further highlight that the axSpA patient experience is poorly understood – an unmet need which international patient organization, Ankylosing Spondylitis International Federation (ASIF), is urging to be addressed.
AxSpA places a huge physical impact and psychological stress on those living with the condition, disrupting every aspect of their life and its quality, including mobility, sleep, work, and relationships. It is important to understand that symptoms vary from day to day and may impact people differently throughout their lives – and those affected by this should not remain silent, but speak out and get the support they need.”
Raj Mahapatra, ASIF trustee
The data show that nearly two thirds of the 2,846 participants experienced work related issues, with the majority forced to take sick leave (56%) and many (45%) having difficulties in fulfilling their working hours. Many began experiencing these disruptive and debilitating symptoms at around the age of 26 – a time when many people are in the prime of their lives.
Furthermore, results revealed that people living with axSpA can struggle for years before receiving an accurate diagnosis. On average, European participants were not diagnosed until over seven years after they developed symptoms, delaying treatment and potentially leading to a worse outcome for the patient, making them more likely to experience work-related issues. The survey also showed that patients most commonly feared losing mobility, pain and their disease progressing, but despite these fears, one in three had never discussed their treatment goals with their doctor.
The survey highlights the need for open discussions between a person living with axSpA and their doctor to ensure that treatment goals are informed by the holistic needs of the patient. Through shared decision making and setting personal treatment goals, doctors and patients can work together to improve the patient’s health outcomes, allowing them to lead a more productive life both personally and professionally.”
Dr. Victoria Navarro, Hospital Universitario La Paz (Madrid)
We are grateful to collaborate on this mission together with ASIF, the University of Seville and the medical and patient communities in the participating countries. AxSpA is still a disease that remains not well understood around the world. Together with our partners, we want to raise the voice of the patients to ultimately improve their care and quality of life.”
Sam Khalil, Worldwide Head of Medical Affairs Immunology, Hepatology and Dermatology at Novartis