Informing patients with rare diseases about COVID-19: Creation of the “Beto and the Coronavirus” booklet

SARS-CoV-2 infection presents a higher risk of morbidity and mortality in patients with chronic diseases. The care of patients with rare diseases, needed to be adapted after the start of the pandemic. Among the IEM, Mucopolysaccharidoses (MPS), Fabry Disease and Gaucher Disease are examples that also require frequent hospital visits for enzymatic replacement therapy (ERT) weekly or biweekly. Due to the pandemic, many infusions had to be reallocated to the patients' cities of origin or had their doses adjusted to reduce hospital exposure. Thinking about how to communicate simply the new flowchart of care and treatment, in addition to addressing general issues regarding the pandemic, our group created ‘Beto and the Coronavirus’ information booklet for patients.ObjectivesTo report the creation of simple and playful educational material on the main care that a patient with a rare disease should have both at home and in the hospital.MethodologyThe booklet was developed from the ‘Flowchart of therapeutic decision for patients with the lysosomal disease (DL) during the COVD-19 pandemic of the Brazilian Society of Medical Genetics and Genomics”. The illustrations were made by our team. The dissemination took place through the Instituto Genetica para Todos, having been translated into 3 languages.Practice changesThe booklet made it possible to understand the new service and treatment flowcharts thoroughly. It also allowed it to be discussed with younger patients the role of personal protective equipment by both the team and the patient himself. The main character, Beto, also has MPS and needs to make ERT which generates a greater identification of patients with the booklet.Final considerationsThe pandemic has brought about wide-ranging modifications, including the treatment and follow-up of patients with rare diseases. Clear, simple, and playful communication allows for a greater understanding of the current situation.