Impact of COVID-19 pandemic on access to online therapeutic education programs for children with sickle cell disease

Abstract

BackgroundSickle cell disease (SCD) is a lifelong disease for which outcomes may be influenced by patients' self-care knowledge. Therapeutic education (TPE) is a patient-centered teaching instrument based on patient's adaptative processes and needs. TPE was developed in the Paris area by a pediatric health network using interactive face-to-face meetings. The COVID-19 pandemic has impacted the TPE modalities by promoting online training. Our aims were to evaluate the accessibility of patients with SCD to online TPE. MethodsWe compared sessions of TPE before and after the onset of the pandemic: the number of sessions, performed face-to-face or online, individual or in a group. We also recorded the number of participants in each session and their age, school level, and department in France. FindingsWe observed an increase in the total number of trained children, but participation varied greatly according to the geographical area of residence, with a decrease from 22.4% to 4.9% in the proportion of attendees living in the most socio-economically deprived French departments. DiscussionOnline TPE is feasible for patients with SCD but with unequal access according to socio-economic status. Application to practiceAccess to TPE needs to be improved for patients living in socially disadvantaged areas.