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Optimizing the use of patient-reported outcome measures in axial spondyloarthritis: a mixed-methods study from the
Xavier Juanola1, Loreto Carmona2, Teresa Oton2
1Rheumatology Department. University Hospital Bellvitge, Idibell., L'Hospitalet de Llobregat, Barcelona, Spain.
Background:
Patient-reported outcome measures (PROMs) are essential for assessing disease activity, functioning, and quality of life in axial spondyloarthritis (axSpA). However, despite guideline recommendations, their integration into routine clinical practice remains inconsistent, partly due to challenges in comprehension, interpretation, and perceived usefulness. The aim of this QUESTIONAX study was to assess the use of existing PROMs in axSpA and to identify opportunities to improve their applicability in routine clinical practice.
Methodology:
A mixed methods study was conducted to explore the use and understanding of PROMs in axSpA. Cognitive interviews were conducted with patients to assess how they comprehend and respond to commonly used PROMs (BASDAI, BASFI, ASAS-HI, and disease-activity numeric rating scale). Semi-structured interviews with healthcare professionals were also performed. Additionally, online surveys were distributed to broader samples of patients and professionals to explore PROM use, perceived purpose, and associated difficulties. Qualitative data were analyzed descriptively to identify recurring themes and patterns.
Results:
Patients reported frequent completion of PROMs but showed limited understanding of their purpose, scoring, and relevance to clinical decision-making. Certain BASDAI items, particularly those related to peripheral pain, caused confusion. ASAS-HI was less familiar and raised concerns about clarity and relevance. Healthcare professionals were generally familiar with PROMs but reported inconsistent use, mainly due to time constraints and difficulties interpreting scores. Both groups highlighted the need for clearer instructions, improved formatting, and better integration into clinical workflows.
Conclusions:
Although PROMs are valuable tools in axSpA, their effective use is limited by barriers related to comprehension and implementation. Improving clarity, education, and workflow integration-without altering validated content-may enhance their usability and clinical impact.