ABSTRACT
Background/AimsThe impact of the COVID-19 pandemic on adolescent and youngpatients with chronic diseases is likely to be multi-factorial, andinfluenced by various aspects, such as age, sex, education, ethnicity, as well as disease control or personal coping strategies. Adolescentsand young adults are at a time in their live when disruption in theireducation and social life, as well as uncertainty related to professionalprospects and long-term disease outcomes are all associated withsignificant personal concerns. The aim of this survey was to assess themain determinants of COVID-19 associated concern in adolescent andyoung adults with JSLE and JDM as well as their well-being andresilience.MethodsQuestionnaires comprising of questions related to patient and diseasecharacteristics, wellbeing, resilience and concern about the COVID-19pandemic were disseminated through hospital contacts and patient charities social media platforms. Participation was voluntary andimplied consent. The preliminary results of this ongoing survey havebeen analysed using descriptive statistics and linear regression (R).ResultsThe main patient and disease characteristics, self-reported well-being, resilience and perceived concern about the COVID-19 pandemic arepresented in comparison in male vs. female patients. Linear regressionshowed that the strongest determinant of COVID-19 concern was selfreported disease activity (p < 0.0003). The self-reported diseaseactivity was associated with the COVID-19 concern level in bothfemale (P = 0.003) and male patients (p = 0.004) and also with diseaseduration in males (P = 0.018). The COVID concern was not affected byany other factors such as, employment, education, well-being orresilience.ConclusionThe preliminary analysis of our survey showed that patient-reportedCOVID-19 concern during the pandemic was strongly determined bythe self-reported disease activity irrespective of patients' sex, despitesignificantly increased concern in the female compared to malepatients, and association with disease duration in male patients only.We propose that further strategies for better patient support during thepandemic should focus on their optimal disease control as well as takeinto consideration the sex-biased patient concerns.