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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

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