Patients Describe a Different PsA. New Assessment Tools Needed?

Cooksey R, Brophy S, Dennis M, et al., Severe flare as a predictor of poor outcome in ankylosing spondylitis: a cohort study using questionnaire and routine data linkage. Rheumatology 2015; doi: 10.1093/rheumatology/kev015 First published online: March 22, 2015.

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Flares in PsA and other forms of inflammatory arthritis, including axial spondylitis (AS), are typically defined as the absence of remission or of minimal disease activity.
But many patients in a study from the University of Glasgow and Swansea University in Wales describe a pattern of constant disease activity, rather than a distinct flare. 

In the first report above, interviews with 348 Welsh AS patients, conducted every 3 to 6 months, reveal that 90% are affected by flares at some point.

They described the flares as either localized and “non-severe,” mainly involving pain and immobility one area, or generalized and “severe,” affecting the whole body with severe pain and immobility and significant systemic features (flu-like symptoms, fever, and marked fatigue), plus emotional symptoms such as depression.

Fully 60% report a pattern of continual unremitting disease (severe or non-severe flares without remission). Regression analysis adjusting for depression, anxiety, current flare, age, gender and smoking indicates that this unremitting disease is associated with worse function and disease activity.

A majority of the patients (72%), most of them men (median age 56) who had had AS for several decades, report experiencing severe flares for around five years even before they were diagnosed.

Those with constant, non-remitting disease tended to be female and smokers. They had higher disease activity, worse function, and more work impairment.

Over half of the patients (58%) report severe flares. They tend to be younger (median age 50), with higher disease activity during and between flares and worse function in between flares. They are also less likely to be employed and have higher work impairment.

Those with severe flares were also three times more likely to experience depression and twice as likely to have anxiety than patients who’d never experienced a severe flare.

Linking the interview data to electronic medical records show increased visits to general practitioners and more prescriptions for anti-tumor necrosis-factor (TNF) drugs among those with severe flares.

PsA Beyond the Joints

Similar multidimensional aspects to disease flares emerged from another interview study among patients in a UK PsA clinic (n=18), this one from investigators at Leeds University. “It is clear that flare in PsA is more than a swollen or tender joint count as measured in clinical practice,” those authors comment.

The semi-structured interviews sought a patient-driven definition of PsA flares that goes beyond the clinical absence of remission or disease activity. Approximately one-third of the patients said they were having a flare at the time of the interview.

The patients (half of whom were men, a mean age of 44), report multiple symptoms during a flare, with pain, heat, stiffness, swelling, and skin psoriasis posing a significant burden, along with fatigue, loss of normal physical function and emotional symptoms.

However, those aspects of flares in PsA, AS, and other forms of inflammatory arthritis are not associated with established biological or clinical markers, so disease management guidelines don’t take them into consideration, the British researchers note.

To assess flares from a patient’s perspective, all the rheumatologist has to go by are self-report instruments such as the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), they add.

A major problem with patient self-reports in clinical practice is that they are often at odds with what the rheumatologist observes and, in the absence of biomarkers or imaging benchmarks, PsA or AS flares may be under-recognized.

Indeed, a recent Canadian study of 565 PsA clinic patients finds that patients report worse disease assessment than their physicians do. The biggest factor in this discrepancy: patient pain.

In that study, as in many clinic visits, tender and swollen joint counts play a bigger role in physician global assessment scores, with pain accounting for only 7% of the scores.
One reason for such discrepancies, the University of Leeds researchers say, is that patients play almost no role in developing PsA assessment tools.

They hope to take prominent themes from their data and use them to establish core domains of flare in PsA that could be used to develop assessment tools for use both in clinical trials and in everyday practice.