- New European data from IMAS survey show that people living with axial spondyloarthritis (axSpA) suffer a delay in diagnosis of over 7 years, potentially leading to an increase in work-related issues due to worsening disease burden
- The experience of people living with axSpA, a long-term inflammatory spine condition as prevalent as rheumatoid arthritis , , needs to be better understood to help patients manage their disease
- The Ankylosing Spondylitis International Federation urges people living with axSpA to speak out to get the support they need
Basel, June 13, 2019 - 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," said Raj Mahapatra, ASIF trustee. "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."
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" said Dr. Victoria Navarro, Hospital Universitario La Paz (Madrid). "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."
"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" said Sam Khalil, Worldwide Head of Medical Affairs Immunology, Hepatology and Dermatology at Novartis. "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."
What is axSpA?
AxSpA is a long-term inflammatory spine condition that includes ankylosing spondylitis (AS), the radiographic form, as well as the non-radiographic (nr-axSpA) form , . If left untreated, it can lead to irreversible structural damage, loss of mobility, functional disability and a reduced quality of life.
About the International Map of Axial Spondyloarthritis (IMAS)
IMAS is a research initiative developed to help improve the way axial spondyloarthritis (axSpA) is managed, and ultimately decrease its impact on patients’ day-to-day life. IMAS was created by patients, for patients, thus giving them the unique ability to address the questions that matter most to patients about their disease, the disruptive impact on their lives and the management of their disease. The European data from IMAS included 2,846 people with a self-reported diagnosis of axSpA from 13 countries who provided insights into their experiences of living with axSpA, and the effect the disease has on their daily lives and their physical and mental health. IMAS is funded, owned and supported by Novartis.
ASIF is an international membership organisation representing national patient associations around the globe specializing in the support of patients with axial spondyloarthritis. ASIF’s mission is to increase awareness of axial spondyloarthritis (axSpA) and knowledge of the disease around the world to all key stakeholders be they people living with AxSpa, health care professionals, researchers, pharmaceutical organisations, policy makers or the general public.
Patient-reported Impact of Axial Spondyloarthritis on Working Life: Results from the EMAS Survey Presented at the Annual European Congress of Rheumatology (EULAR 2019). June 13, 2019.
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