Exploring the emotional impact of axial Spondyloarthritis: a systematic review and thematic synthesis of qualitative studies and a review of social media

Abstract

Background The psychological burden in people with inflammatory arthritis is substantial, yet little is known about the disease-related affect experienced by individuals with axial Spondyloarthritis (axial SpA). The aim of this study was to conduct a qualitative evidence synthesis and a review of social media to explore the emotional impact of living with axial SpA. Methods We searched nine databases for studies reporting qualitative data about participants’ emotional experience of living with axial SpA. In addition, we searched social media platforms for posts from people with axial SpA based in the UK that offered insights into emotional responses to living with the condition. We employed a thematic approach to synthesise the data. Results We included 27 studies (1314 participants; 72% men) in our qualitative evidence synthesis and developed seven descriptive themes from the data: 1) delayed diagnosis: a barrier to emotional wellbeing; 2) disruptive symptoms: a source of mood swings; 3) work disability: a loss of self-esteem; 4) obstacles in interpersonal relationships: a trigger of distress; 5) taking up exercise: personal pride or unwelcomed reminders; 6) anti-TNF therapy: hope reignited despite concerns and 7) a journey of acceptance: worry mixed with hope. Posts extracted from social media fora (537; 48% from women) for the most part supported the seven themes. One additional theme—COVID-19, uncertainty and anxiety during the pandemic, was developed, reflecting common emotions expressed during the UK’s first wave of the coronavirus pandemic. Conclusion This study highlights a preponderance of negative affect experienced by people living with axial SpA, conditioned through existing and anticipated symptoms, failed expectations, and lost sense of self. Given the bidirectional relationships between negative emotions and inflammation, negative emotions and perceptions of pain, and the influence of affect in self-care behaviours, this finding has important implications for treatment and management of people with axial SpA.

Diagnosis, monitoring, and management of axial spondyloarthritis

“…The effects of axSpA go beyond physical manifestations and encompass psychological and social aspects [ 108 , 109 ]. Psychologists and social workers are essential members of the multidisciplinary team, as they address mental health issues and assist patients in managing the difficulties associated with living with a persistent inflammatory disease.…”

From Web to RheumaLpack: Creating a Linguistic Corpus for Exploitation and Knowledge Discovery in Rheumatology

“…These last data sources have received special attention in recent years in the healthcare sector Nawaz et al [2017]. In fact, patients are prone to use social media websites for health-related purposes Studenic et al [2018], Taik et al [2024], Blackie et al [2023], and to express their feelings Wilson et al [2023], Abbasi-Perez et al [2023], creating what is known as patient-generated data. Finally, accredited health websites provide trustworthy health information which can complement the previous data sources for training specialised AI systems.…”

Beyond the horizon: Innovations and future directions in axial-spondyloarthritis

“…Furthermore, structural damage is irreversible and leads to increasing disability, loss of quality of life, and need for surgical interventions over time. [ 13 - 15 ]…”

“…Furthermore, structural damage is irreversible and leads to increasing disability, loss of quality of life, and need for surgical interventions over time. [13][14][15] Despite the availability of effective treatments, an unsolved problem remains the average delay from symptom onset to diagnosis, which remains around 5-10 years globally. 16,17 This diagnostic delay has motivated intensive research to better understand the pathophysiology and natural history of axSpA, and to optimize strategies for early identification and treatment.…”