Failed Expectations, Loss of Self, Weigh on Patients With Axial SpA

Unpredictable symptoms, failed expectations, and loss of self have a negative influence on the emotional health of patients with axial spondyloarthritis (axial SpA), according to a study published online in BMC Rheumatology.

“Given the bidirectional relationships between negative emotions and inflammation, negative emotions and perceptions of pain, and the influence of affect in self-care behaviors, this finding has important implications for treatment and management of people with axial SpA,” wrote corresponding author Nicky Wilson, PhD, of King’s College Hospital NHS Foundation Trust, London, United Kingdom, and coauthors.

Researchers conducted a thematic synthesis of 27 studies and reviewed 537 social media posts to gauge the psychological burden of patients with axial SpA.

Data from the studies fit 7 descriptive themes, researchers reported:

• a negative effect of delayed diagnosis on mental wellbeing;
• disruptive symptoms, and their unpredictability, as triggers for mood swings;
• a loss of self-esteem from work disability and perceived stigma from colleagues;
• obstacles in interpersonal relationships as a trigger for distress;
• exercise as a source of personal pride or an unwelcome reminder of axial SpA;
• hope and concerns surrounding the initiation of antitumor necrosis factor therapy; and
• acceptance as a journey that includes hope and worry.

Among the 1314 patients in the 27 studies, 72% were men. Social media posts were more balanced by sex, with 48% written by women.

Social media posts generally supported the 7 descriptive themes gleaned from the studies, according to the review, with the addition of a more timely issue: uncertainty and anxiety during the COVID-19 pandemic. Emotional triggers included biologic injections, immunosuppression, and reduced access to rheumatology services.

“The under representation of women in our review is noteworthy,” researchers wrote. “Thus, we have undertaken a contemporary primary qualitative study to explicitly explore affect in both men and women with axial SpA in the early phase after diagnosis. This study is currently in its final stages.”

Reference:
Wilson N, Liu J, Adamjee Q, et al. Exploring the emotional impact of axial spondyloarthritis: a systematic review and thematic synthesis of qualitative studies and a review of social media. BMC Rheumatol. 2023;7(1):26. doi: 10.1186/s41927-023-00351-w