Illness perceptions among adults aged 18–44 years with ankylosing spondylitis: A qualitative study informed by the common-sense model of self-regulation

Background Ankylosing spondylitis mainly affects people in early and middle adulthood. This period involves important transitions in education, career, relationships, and family. Illness perceptions play an important role in treatment adherence and disease management. Few qualitative studies have examined how Chinese adults perceive and cope with the disease using a clear theoretical framework. Objective This study aimed to explore illness perceptions among adults aged 18–44 years with ankylosing spondylitis, informed by the Common-Sense Model of Self-Regulation. Methods This was a qualitative descriptive study conducted in a tertiary hospital in Nanjing, China. Sixteen adults aged 18–44 years with ankylosing spondylitis were recruited through maximum variation purposive sampling. Data were collected through face-to-face semi-structured interviews and analyzed using thematic analysis. Results Three themes were identified: fragmentation and biases in illness perceptions; disrupted daily life and recurring emotional burden; and negotiating control between professional support and experiential self-management. Conclusions Illness perceptions among adults aged 18–44 years with ankylosing spondylitis were dynamic and context-dependent, influenced by symptom experiences, causal interpretations, perceived consequences, and ongoing negotiation between professional guidance and experiential self-management. Illness coherence did not necessarily increase with longer disease duration, and no consistent age-related pattern emerged. These findings offer insight into how adults with AS construct and adapt their illness perceptions, which may guide future patient-centered support.