Abstract
PurposeThe ankylosing spondylitis quality of life (ASQoL) instrument is widely used to assess health-related quality of life in patients with ankylosing spondylitis (AS). We assessed the relevance of the ASQoL items in patients with non-radiographic axial spondyloarthritis (nr-axSpA), a distinct subgroup within the axSpA disease spectrum.MethodsThis observational, cross-sectional, qualitative interview study recruited patients from clinic settings. Interviews from patients with axSpA who participated in a prior qualitative study were also used. Patients initially underwent a concept elicitation interview using open-ended questions to evaluate relevance of the concepts measured by the ASQoL. They then completed the ASQoL and underwent a cognitive interview to assess their understanding of the items, instructions and response options. Transcripts from patients who participated in the previous qualitative study (who did not complete the ASQoL or undergo cognitive interview) were evaluated to identify expressions of the concepts in the ASQoL.ResultsA total of 18 patients with nr-axSpA participated. The concept elicitation interview findings supported the relevance of the ASQoL items. Cognitive interviews determined that the ASQoL was easily understood; the 13 new patients chose a response for each item that matched their experience with nr-axSpA. Transcripts for the five previously interviewed patients confirmed the concepts presented in the ASQoL items were relevant and important to their experience of living with nr-axSpA.ConclusionsOur results represent an important first step in confirming the relevance of the concepts in the ASQoL to patients with nr-axSpA, supporting quantitative assessment of ASQoL validity in this population.
Highlights
Axial spondyloarthritis is a chronic inflammatory disease with a heterogeneous clinical phenotype that primarily affects the sacroiliac joints and spine
The relevance of the ankylosing spondylitis quality of life (ASQoL) content had not been explored previously in patients with nr-axSpA. The results of this qualitative study demonstrate that the similarities of the signs and symptoms and related impact on health-related quality of life (HRQoL) experienced by these patient populations translates into a similarity in the appropriateness of ASQoL items
The concept elicitation interviews indicated that the concepts assessed by the ASQoL items were highly relevant to this patient population, accurately reflecting their experiences in terms of disease symptoms and the resulting impact on HRQoL
Summary
Axial spondyloarthritis (axSpA) is a chronic inflammatory disease with a heterogeneous clinical phenotype that primarily affects the sacroiliac joints and spine. Differences observed between the two subgroups include a higher male:female ratio (3:1 for AS [6] vs 1:1.6 for nraxSpA [7]), higher levels of C-reactive protein (CRP) and lower rates of peripheral manifestations such as peripheral arthritis and enthesitis in AS compared with nr-axSpA [8, 9] Both subgroups present with similar clinical characteristics, have a similar burden of disease and are associated with substantially impaired physical function and health-related quality of life (HRQoL) [8,9,10,11,12,13]. Real-world data have shown significantly reduced HRQoL and work productivity in patients with nr-axSpA compared with general population controls [19]
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