Table 8 Patient education in epidermolysis bullosa: principles and contents

Principles

• 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

Contents

• 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