Transition of care in adolescents with epidermolysis bullosa: The provider perspective.

Autor:	Perez VA; Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.; Department of Dermatology, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA., Mulinda C; Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA., Bruckner AL; Department of Dermatology, University of Colorado School of Medicine, Aurora, Colorado, USA.; Department of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA., Diaz LZ; Department of Pediatrics, Dell Medical School, University of Texas at Austin, Austin, Texas, USA.; Department of Medicine (Dermatology), Dell Medical School, University of Texas at Austin, Austin, Texas, USA., Hook KP; Department of Dermatology, University of Minnesota, Minneapolis, Minnesota, USA., Lara-Corrales I; Division of Dermatology, Department of Pediatrics, Hospital for Sick Children Dermatology, Toronto, Ontario, Canada., Levy ML; Department of Pediatrics, Dell Medical School, University of Texas at Austin, Austin, Texas, USA.; Department of Medicine (Dermatology), Dell Medical School, University of Texas at Austin, Austin, Texas, USA., Price HN; Department of Dermatology, Phoenix Children's Hospital, Phoenix, Arizona, USA., Morel KD; Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.; Department of Dermatology, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.; Department of Pediatrics, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA., Levin LE; Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.; Department of Dermatology, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.
Jazyk:	angličtina
Zdroj:	Pediatric dermatology [Pediatr Dermatol] 2024 Sep 05. Date of Electronic Publication: 2024 Sep 05.
DOI:	10.1111/pde.15650
Abstrakt:	The characteristics of epidermolysis bullosa (EB) demand higher than average provider support for transition from pediatric to adult care. We administered an online Qualtrics survey to members of the Epidermolysis Bullosa Clinical Research Consortium (EBCRC), a group of providers who care for patients with EB, in order to examine their practices and perspectives on transition of care (TOC) and identify barriers to successful implementation. Sixteen of eighteen medical centers completed the survey. Eighty-eight percent of center representatives expressed concerns about their patients transitioning/transferring from the pediatric to adult-centered care. Thirty-eight percent of providers reported having a formal TOC program in place. Our findings support the desire for formal TOC programs, the need for a team-based approach and, in particular, identification of adult providers to participate in the transition to improve this often challenging time. (© 2024 Wiley Periodicals LLC.)
Databáze:	MEDLINE
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