Perceptions and experiences of health care service use during the pandemic for children with uveitis: UNICORNS-C19 study

Abstract

Purpose : COVID-19 has disrupted provision of and access to healthcare. Children newly diagnosed with uveitis are particularly vulnerable to these disruptions. We aimed to describe the impact of the pandemic on the experiences and perceptions of care use for families of children newly diagnosed with uveitis. Methods : UNICORNS-C19 is a cross-sectional study embedded within the Uveitis in Childhood National Prospective Cohort Study (UNICORNS), which is recruiting UK children with non-infectious uveitis in order to understand the sociodemographic, clinical and biological determinants of disease and treatment outcomes and quality of life. We distributed (postally and electronically) a modified Health Foundation / Ipsos Mori survey, which comprises 13 questions (closed and open) around health and social care. Quantitative data were analysed using descriptive statistics, free text responses were analysed using qualitative thematic analysis. A framework was developed to index and chart data into themes through an iterative process. Results : Response rate to date is 42 of the 95 UNICORNS families approached (44%). Of those who participated, 61% expressed concern over the impact of the pandemic on their health, with a third (31%) expressing difficulties in accessing essential medication, and 56% finding it harder to get basic food stuffs. Despite this, the majority expressed a positive experience with NHS services, with 72% being comfortable using their specialist hospital during the pandemic. Key themes identified in analysis included positive experiences of safety procedures and the adoption of digital health tools across different levels of care (primary to quaternary); negative experiences of poor co-ordination of care, or of delivery of synchronous telemedicine care of rare disease from primary / secondary health teams, and negative perceptions around the use of immunosuppression during the pandemic. Conclusions : The UNICORNS study is well placed to provide useful data on patient experience for those starting a rare, chronic childhood disease care pathway during a global pandemic. Our findings suggest that primary and secondary care teams require additional support in delivering / co-ordinating care for those with rare disease. UNICORN C-19 findings will inform recommendations for future service planning. This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually