Impact of COVID-19 pandemic on access to education programs for children with sickle cell disease and social deprivation: a qualitative study (Preprint)

Abstract

BACKGROUND Sickle cell disease is a lifelong disease for which health outcomes may be greatly influenced by patient and parent self-care knowledge and skills. Therapeutic education (TPE) is a patient-centered teaching instrument, based on patient adaptative processes and their subjective and objective needs, whether expressed or not. TPE is delivered in individual or group sessions, usually during face-to-face meetings. The COVID-19 pandemic has impacted the modalities of TPE by promoting online training. The RoFSED health network, which operates in the Paris region and is focused on coordination of care and TPE for children with SCD, has implemented online TPE since May 2020. OBJECTIVE To evaluate the accessibility of children with SCD to online TPE. METHODS Characteristics of TPE before and after the onset of the pandemic were compared to evaluate the accessibility of children with SCD to online TPE. RESULTS We observed an increase in the total number of trained children, mostly related to increased participation in individual sessions. The age distribution of participants did not vary. However, participation varied greatly according to the geographical area of residence, with a major drop from 22.4 to 4.9% of attendees living in Seine saint Denis, one of the most socio-economically deprived French departments, contrasting with an increased proportion of attendees living in Paris and Hauts-de-Seine, two of the most favoured French departments. CONCLUSIONS Our results highlight the potential of online TPE tools for patients and families with SCD but also reveal unequal access according to socio-economic status. Future research is needed, in particular on the safety and efficacy of these tools, as well as on improving access for the more vulnerable patients living in socially disadvantaged areas.