Transition of care in patients with epidermolysis bullosa: A survey study

Joohee Han, Morgan Dykman, Scott Lunos, Audrey Nguyen, Kristen P. Hook, Irene Lara-Corrales, Harper N. Price, Lucia Diaz, Moise Levy, Christina Boull

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

There are little published data on the transition of care in EB. We conducted a survey study recruiting EB patients from the Dystrophic EB Research Association (debra) website and centers caring for high numbers of EB patients in the United States and internationally from Sept 17, 2019 to Nov 3, 2021. The majority of participants had not discussed the transition of care with their healthcare providers, nor the healthcare needs to be required as an adult. Ongoing pediatric subspecialty care was reported by 12% of adults, most commonly in pediatric dermatology. Identified barriers to transition included the perceived lack of adult providers' knowledge about EB patient healthcare needs. The results suggest the need for transition guidelines, early discussions with families about transition, and practical information for the adult providers accepting care.

Original languageEnglish (US)
Pages (from-to)258-260
Number of pages3
JournalPediatric Dermatology
Volume40
Issue number2
DOIs
StatePublished - Mar 1 2023

Bibliographical note

Publisher Copyright:
© 2022 Wiley Periodicals LLC.

Keywords

  • epidermolysis bullosa
  • survey study
  • transition of care

PubMed: MeSH publication types

  • Journal Article

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