LAUSR

Childhood Systemic Lupus Erythematosus (cSLE) is a chronic disease requiring a significant burden of immunosuppression and frequent hospital follow-up. Infection risk and need for access to hydroxychloroquine to prevent relapses of SLE were potential concerns at the onset of COVID-19 pandemic. Eighteen cSLE patients and parents (n = 15) were recruited prospectively across two tertiary sites, Sydney Children’s Hospital and Children’s Hospital Westmead. Participants were asked about the impact of COVID-19, as part of a larger study examining quality of life determinants. Questionnaires were completed between 1 July 2020 and 18 November 2020. Sydney Children’s Hospitals Network Ethics Committee granted ethics approval. Median age of children was 15 years (interquartile range 13–16) and 88.9% were female. Median duration of SLE was 25.5 months (interquartile range 11–57). Prednisone dosing ranged 0.05–0.19 mg/kg/day. When asked ‘Are you worried that if you caught coronavirus you would be unwell because of your lupus?’, 88.2% of children and 93.3% of parents replied affirmatively. Median 5-Faces rating scale response for children was 1, which corresponds to the worst crying face. Common themes expressed included higher anxiety levels and the need to modify family behaviours. One respondent stated COVID-19 had influenced a major family move while another identified their child falling behind peers because of exclusion from school and social events. Only one (6.7%) had difficulty obtaining hydroxychloroquine; 20% believed their routine health care had been impacted. From this small study, access to medical care and pharmaceuticals was reasonably well maintained during the initial phases of the pandemic. Early media reports of hydroxychloroquine ‘treating’ COVID-19 infection saw a doubling of the average prescription rate in March 2020 compared with two preceding years leading to concerns regarding access for SLE patients. However, regulatory changes by the Therapeutic Goods Administration in May successfully addressed this by the time our survey commenced in July. The high degree of anxiety expressed by families needs to be explored. Overseas studies have reported higher rates of mental health problems during the pandemic in adults with chronic illness compared to controls. Mental health effects have been seen for up to 3 years after previous respiratory epidemics in patients with chronic illness, which could significantly impact the life-course of adolescents with cSLE and other chronic illnesses. We suggest that children with chronic health conditions requiring immunosuppression such as SLE should receive psychological assessment and support as an important part of our COVID-19 health response. The federal government invested $24.2 million in mental health services for young people by mid2020, but waiting times were already stretched. Additional funding and resources will be critical in this area.