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

doi:10.1111/pde.15232

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 journal › Article › peer-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 language	English (US)
Pages (from-to)	258-260
Number of pages	3
Journal	Pediatric Dermatology
Volume	40
Issue number	2
DOIs	https://doi.org/10.1111/pde.15232
State	Published - Mar 1 2023

Bibliographical note

Funding Information:
We thank the PeDRA EB research subgroup for their input and guidance in formulating this study and the Dystrophic EB Research Association of America (debra) for posting the survey.

Publisher Copyright:
© 2022 Wiley Periodicals LLC.

Keywords

epidermolysis bullosa
survey study
transition of care

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title = "Transition of care in patients with epidermolysis bullosa: A survey study",

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.",

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note = "Funding Information: We thank the PeDRA EB research subgroup for their input and guidance in formulating this study and the Dystrophic EB Research Association of America (debra) for posting the survey. Publisher Copyright: {\textcopyright} 2022 Wiley Periodicals LLC.",

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AU - Han, Joohee

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AU - Hook, Kristen P.

AU - Lara-Corrales, Irene

AU - Price, Harper N.

AU - Diaz, Lucia

AU - Levy, Moise

AU - Boull, Christina

N1 - Funding Information: We thank the PeDRA EB research subgroup for their input and guidance in formulating this study and the Dystrophic EB Research Association of America (debra) for posting the survey. Publisher Copyright: © 2022 Wiley Periodicals LLC.

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N2 - 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.

AB - 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.

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

Abstract

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Keywords

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