Difficult-to-Manage Axial Spondyloarthritis

Written by: Professor Antoni Chan, Consultant Rheumatologist and Physician, Royal Berkshire Hospital and University of Reading, UK

AxSpA affects the spine and pelvis, causing chronic pain, stiffness, fatigue and reduced quality of life. Many people respond well to modern treatments, such as biologics and targeted therapies. However, a substantial group continue to struggle despite trying several treatments. These patients are often described as having difficult-to-manage disease but until recently, there was no agreed way to define who this actually includes.

In 2025, the Assessment of SpondyloArthritis International Society (ASAS), working with clinicians and patient representatives, published a new international definition of difficult-to-manage (D2M) axSpA¹. The aim was to create a shared definition so that patients, clinicians, researchers and advocacy groups can better identify unmet needs and improve care.

What does difficult-to-manage mean in practice?

According to the ASAS definition, three things must all be present:

1. Treatments have been tried but haven’t worked well enough.
The person has received recommended treatments and has usually tried at least two advanced therapies with different mechanisms (unless these are not suitable or not tolerated).

2. The disease or its impact is still not well controlled.
This could mean ongoing inflammation on blood tests or MRI, high disease activity scores, rapid damage seen on scans, or persistent symptoms that seriously affect daily life such as pain, fatigue, poor sleep or reduced function.

3. The situation feels problematic to the patient and clinician.
This is crucial. Even if test results look acceptable, the patient’s experience matters. If symptoms remain disruptive or distressing, this is recognised together with the clinician.

Within this group, a smaller subset is described as treatment-refractory axSpA. These are people who still have clear inflammation and high disease activity despite multiple appropriate treatments, after excluding other explanations such as incorrect diagnosis, poor medication tolerance or non-inflammatory pain.

Why is this important for people living with axSpA?

A clear definition helps ensure that people who are struggling are recognised earlier and not dismissed as simply hard to treat. It encourages a more holistic review: checking diagnosis, treatment adherence, imaging, pain mechanisms, mental health, fatigue, work impact and co-existing conditions. It also supports referrals to multidisciplinary care for example physiotherapy, pain services, psychology and occupational therapy rather than relying only on switching medications.

Why is this relevant for ASIF?

For ASIF and its member organisations, this definition strengthens advocacy and education for four reasons:

1. It provides a shared definition to explain complex patient experiences to clinicians, policymakers and funders.

2. It is an evidence-based justification for better access to specialist care, multidisciplinary services and new therapies.

3. It is a framework for research and registries to understand how many people live with D2M axSpA and what helps them most.

4. It empowers patients, helping them articulate why their disease remains challenging even after multiple treatments.

The definition also reinforces that difficult-to-manage axSpA is not a personal failure. It reflects the complexity of the disease and the need for personalised, compassionate and coordinated care. By using this framework, ASIF and our members can continue to champion better recognition, support and outcomes for people whose axSpA remains difficult to control.

Reference

Poddubnyy D, Navarro-Compán V, Torgutalp M et al. The Assessment of SpondyloArthritis International Society (ASAS) Consensus-Based Expert Definition of Difficult-to-Manage, including Treatment-Refractory, Axial Spondyloarthritis. Ann Rheum Dis. 2025 Apr;84(4):538-546. doi: 10.1016/j.ard.2025.01.035. Epub 2025 Feb 14. PMID: 39955166.