Transition of care in adolescents with epidermolysis bullosa: The provider perspective.
Pediatr Dermatol
; 2024 Sep 05.
Article
en En
| MEDLINE
| ID: mdl-39235093
ABSTRACT
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.
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Idioma:
En
Revista:
Pediatr Dermatol
/
Pediatr. dermatol
/
Pediatric dermatology
Año:
2024
Tipo del documento:
Article
País de afiliación:
Estados Unidos