Consensus Recommendations for Management of EB during the COVID pandemic

New scientific publication with EB House contribution

The global COVID-19 pandemic has affected everyone’s lives, but especially people with rare diseases and their families have to deal with an additional burden to their already compromised quality of life. The complex pandemic situation exposes EB patients to another health threat forcing them to face extra challenges from potential reduced access to medical care, and possible increased anxiety and stress. One of the greatest fears of families caring for EB patients is how they will be treated in case a hospital admission becomes necessary. They are concerned whether healthcare staff unfamiliar with EB will employ the appropriate measures, especially if blood transfusions, masks and ventilators are needed.

This very important topic of emergency treatment was as taken up by renowned EB experts from around the world. Together they developed international consensus guidelines in order to provide the best management and protection of EB patients, especially during the COVID-19 pandemic.

For this, a questionnaire was drafted by an experienced medical doctor and EB expert, suggesting a series of modifications to the EB management during the pandemic. Fifty-seven renowned EB experts of different areas of expertise such as dermatology, paediatrics, internal medicine, and surgery from all over the world were selected to participate, of whom 44 returned the questionnaire. Consensus was considered to be achieved if more than 70 % of respondents agree with the suggestions. After several revisions and discussions, consensus to the adapted EB practice was reached for all points.

Main changes include the increased consultation via telemedicine. Lesions should be assessed using photos whenever possible. For severely affected EB patients it was decided that the important monitoring blood and urine tests must be continued but can be performed in local laboratories or at family doctors.
All recommendations and main changes in usual EB management were summarized in a table, published in the scientific Journal of the American Academy of Dermatology.

 

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