Illness Perception in Axial Spondylarthritis: Bridging Mind and Joint

I have learned to survive by loving and listening to my body for exactly what and where it is. This is how Marks Sal, a young man living with axial spondylarthritis (axSpA), perceives his disease 1. When faced with a new diagnosis of a health threat, individuals develop an organized schema of beliefs (“illness representations”) about their condition and symptoms, including both positive and negative illness beliefs. These cognitive and emotional representations of illness are influenced by the individual's biological and psychological traits, knowledge, previous experiences, and sociocultural and environmental factors. Representations, in turn, determine how individuals respond to the health threat and the coping strategies they adopt, in a dynamic process. The way an individual perceives the disease may change over time; that is, individuals will assess the effects of the illness and their coping efforts on themselves as the disease progresses, which can lead to changes in their cognitive representations and emotional responses in a feedback loop 2. The Common-Sense Model of Self-Regulation (CSM) provides a framework for describing and understanding the processes involved in the initiation and maintenance of behaviors for managing illness threats 2. Hagger et al.'s 3 extended model considers the moderating influence of contextual factors on the typical pattern of relations between representations, coping, and outcomes. Illness perception is most often measured using the Illness Perception Questionnaire (IPQ) 4. Positive illness representations have been shown to be a determinant of effective self-management in several chronic diseases, whereas negative illness perceptions are associated with poor patient-reported outcomes over time 3. Interventions targeting illness representations could thus improve self-management skills, adherence, disease and patient outcomes, as well as communication between patients and healthcare professionals. However, behavioral interventions should not only target changes in certain illness representation dimensions linked to adaptive outcomes, but also the coping strategies activated by these representations 3. Psychological factors are important in predicting outcomes in patients with inflammatory arthritis, and one of the factors that plays an important role is patients' illness perception 5. In the last two decades, many authors have researched the influence of illness perception on different aspects of the disease in people with rheumatoid arthritis, chronic pain syndromes, or osteoarthritis. In contrast, data on illness perception in patients with axSpA are scarce but of particular importance. This significance arises not only from the chronic pain and functional limitations typically seen in chronic rheumatic diseases, but also from the unique characteristics of axSpA itself. The condition often begins early in adulthood and frequently goes undiagnosed for extended periods, leading to a substantial impact on the quality of life (QoL), work productivity and contributing to the socioeconomic burden of axSpA 6-8. Illness acceptance can be considered an integral part of illness perception, and it is believed to determine a change in attitude toward the disease. Wysocki et al. found that illness acceptance, measured using the Illness Acceptance Questionnaire, correlated positively with all dimensions of QoL in patients with axSpA in a monocentric, cross-sectional study 9. Illness perception not only influences the emotional aspect of an individual's life, but it also has an impact on their level of pain and physical functioning and vice versa. Physical functioning and emotional representation may influence each other both directly and indirectly. The authors suggest that interventions that primarily influence physical function may also affect illness-related distress, and interventions designed to reduce distress may also increase physical function 6. Recent studies have shown that beliefs about medicines and illness perception predict adherence more strongly than sociodemographic or clinical factors. More specifically, higher IPQ Emotional Representation scores, indicating greater emotional impact, were significantly associated with worse treatment adherence in patients with axSpA in a cross-sectional study by Smolen J et al., which included 812 patients with axSpA 10. A contrasting finding was reported in a cross-sectional study by Tolu et al. on a group of 60 patients with axSpA. The authors found that high IPQ scores were associated with better adherence, while a higher IPQ score regarding the effect of the illness on the individual's life (perceived consequences) was an important predictor of low adherence 11. An important aspect of managing patients with axSpA is the presence of disability due to chronic back pain and loss of work productivity. In this context, a study published by van Leuteren et al. in 2018 investigated the relationship between illness perceptions, health-related QoL (HRQoL), and work productivity loss in patients with axSpA (a cohort including 226 patients) compared to patients with chronic back pain. The authors demonstrated that in patients with axSpA, illness perceptions and coping strategies did not change the association between the levels of bone marrow edema in the sacroiliac joints, although the physical performance improved. They suggest that to improve physical HRQoL and work productivity, the focus should also be on targeting negative illness perceptions 12. An important aspect to consider is the change in illness perception along the disease duration. In this regard, Van Lunteren et al. followed up a cohort of 150 early axSpA patients for 24 months. The authors found that, in contrast to back pain, disease activity, and health outcomes, which improved over the follow-up period, disease perception remained stable. Other studies targeting the same problems were not identified; therefore, it remains unclear whether illness perceptions and coping strategies change spontaneously or can be targeted by an intentional intervention in patients with axSpA 12. In summary, positive illness perceptions have been identified as key contributors to effective self-management in many chronic diseases, whereas negative perceptions are linked to poorer patient-reported outcomes over time. However, evidence on illness perception in patients with axSpA remains limited. Existing studies suggest that illness perception in axSpA could significantly affect pain levels, physical function, QoL, treatment adherence, and work productivity, as well as self-management skills. Despite these associations, targeted strategies to improve illness perception over time are not yet well established, highlighting the need for further research in this area. A better understanding of illness perception might inform patient education, clinical interventions, and future research directions. Victoria Sadovici-Bobeica: literature search and critical appraisal of included studies; writing – original draft. Latika Gupta: conceptualisation, writing – review and editing, supervision. Alexandros Panagiotopoulos: literature search and critical appraisal of included studies. Daliya Tsvetanova Pencheva: literature search and critical appraisal of included studies. Claudia Oana Cobilinschi: literature search and critical appraisal of included studies. Sheina Orbell: conceptualisation, writing – review and editing. Tania Gudu: conceptualisation, writing – review and editing, supervision. All authors contributed to revision of the manuscript and approved the final version for submission. The authors have nothing to report. The authors have nothing to report. The authors declare no conflicts of interest. Data sharing not applicable to this article as no datasets were generated or analysed during the current study.