Concerns about disease management and psychological stress in SAPHO patients during the COVID-19 epidemic

ObjectivesThe coronavirus disease 2019 (COVID-19) epidemic brings potentially impact on the care of patients with rheumatic diseases, including SAPHO syndrome. We aimed to investigate the disease status, concerns about management, and psychological stress in SAPHO patients during the COVID-19 epidemic. MethodA structured questionnaire was distributed online to patients with SAPHO syndrome enrolled in a Chinese cohort study on March 3rd, 2020. Patients were ask about the current treatments, disease status, and concerns about disease management during the epidemic. Psychologic stress (scored from 0 to 10 points) and psychological problems were reported by the patients. ResultsA total of 157 patients (mean age 38.4 {+/-} 12.3 years, 66.9% females) were included in the study. None of the patients were diagnosed with COVID-19. Sixty-five (41.4%) patients worried about their disease conditions during the epidemic with concerns including medication shortage (73.8%), delay of consultation (46.2%), and disease aggravation (61.5%). Sixty-seven (42.7%) patients had medication withdrawal or dose reduction due to lack of drugs, irregular daily schedule or subjective reasons. The most common psychological problems reported was little interest or pleasure in doing things (66.2%). Patients with progressive disease condition were more distressed and disturbed by the epidemic. Patients with nail involvement felt more worried about their disease conditions than patients without (59.6% vs 31.0%, p =0. 001). ConclusionsThe COVID-19 epidemic imposes a negative impact on the disease management and psychological stress in SAPHO patients. Patients access to specialty care and medication well as mental stress is of great concern.