Abstract
Objective
To explore how patients with axial spondyloarthritis (axSpA) and rheumatologists perceive and define difficult-to-manage axSpA (D2M-axSpA), with particular attention to the third criterion of the ASAS definition, referring to "signs/symptoms perceived as problematic".
Methods
This qualitative study used semi-structured individual interviews with patients with axSpA who had received at least three b/tsDMARDs and rheumatologists experienced in axSpA care. Participants were recruited in France. Interviews were audio-recorded, transcribed verbatim and analyzed using an inductive reflexive thematic analysis. Coding was performed iteratively, and themes were refined through team discussions.
Results
Fourteen rheumatologists and 13 patients participated in this study. Five interconnected themes described how D2M-axSpA is understood: (1) uncertainty in attributing persistent symptoms to inflammatory or non-inflammatory mechanisms; (2) persistent symptom burden, particularly pain, fatigue, and functional limitations; (3) patient–physician relationship dynamics, including communication and discordant interpretations of symptoms; (4) healthcare system constraints, such as delays in access to multidisciplinary care; and (5) therapeutic constraints, including limited treatment options, comorbidities, and uncertainty regarding treatment escalation. Patients mainly emphasized the lived burden of symptoms and functional impact, whereas rheumatologists primarily highlighted attributional uncertainty and challenges in interpreting persistent symptoms.
Conclusion
D2M-axSpA is perceived as a multidimensional situation resulting from interactions between symptom burden, attributional uncertainty, relational dynamics, healthcare system constraints, and therapeutic decision-making. These findings suggest that the third criterion of the ASAS definition reflects a broader clinical context beyond refractory inflammation.