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Table 8 Patient education in epidermolysis bullosa: principles and contents

From: Multicentre consensus recommendations for skin care in inherited epidermolysis bullosa


• Should be addressed to the patient, his/her family and caregivers


• Should be delivered individually or in group


• Should be adapted to the EB subtype, patient age, socio-cultural milieu and compliance


• Should be delivered by specialized nurses with the support of the members of the multidisciplinary team and the psychologist


• Should be performed orally and gradually, complemented by the release of information sheets for the patient and his/her family/caregivers


• Should at first clearly communicate the diagnosis, disease course and complications


• Should give clear explanations on the need of an adapted genetic counselling


• Should train the patient and his/her family/caregivers on the management of cutaneous and extracutaneous manifestations


• Should educate the patient and his/her family/caregivers to early recognize infection signs and atypical aspects of the chronic wounds, and to consequently request a rapid evaluation by a dermatologist


• Should provide training on the life style in order to prevent disease worsening