Review of transition of care literature: Epidermolysis bullosa—A paradigm for patients with complex dermatologic conditions - 01/07/21

Doi : 10.1016/j.jaad.2020.06.083

Victoria A. Perez, BA, MS ^a,^⁎ , Kimberly D. Morel, MD ^b,^c, Maria C. Garzon, MD ^b,^c, Christine T. Lauren, MD, MHA ^b,^c, Laura E. Levin, MD ^b
^a Columbia University Vagelos College of Physicians and Surgeons, New York, New York
^b Department of Dermatology, Columbia University Irving Medical Center and New York Presbyterian Hospital, New York, New York
^c Department of Pediatrics, Columbia University Irving Medical Center and New York Presbyterian Hospital, New York, New York

^∗Reprint requests: Victoria A. Perez, BA, MS, 161 Fort Washington Ave, 12th Floor, New York, NY 10032.161 Fort Washington Ave, 12th FloorNew YorkNY10032

Sous presse. Épreuves corrigées par l'auteur. Disponible en ligne depuis le Thursday 01 July 2021
Cet article a été publié dans un numéro de la revue, cliquez ici pour y accéder

Abstract

Background

Transition from pediatric to adult care is a critical component of health care for children with long-term needs. The characteristics of epidermolysis bullosa (EB) demand higher than average levels of provider support. There is consensus among health care professionals regarding the importance of transition; however, there is a scarcity of practical information regarding models for patients with EB.

Objective

To review transition of care programs in varying specialties. Highlight practical considerations to facilitate the development of programs for patients with EB and other complex dermatologic conditions.

Methods

Articles were identified via MEDLINE and EMBASE health literature databases and screened for relevance to transition of care.

Results

Various models for transition exist. A well-executed formal transition program, early introduction, interdisciplinary collaboration, and psychosocial support were themes associated with successful outcomes.

Limitations

Transition of care programs that have not been described in the literature are not reflected in this review.

Conclusions

Patients with EB have unique needs that affect transition and span expertise across traditional boundaries, such as dependency on others for daily skin care, failure to thrive, and risk of squamous cell carcinoma. Given the rarity of the disease, patients with EB will benefit from collaborative efforts to develop programs to optimize successful transition.

Le texte complet de cet article est disponible en PDF.

Graphical abstract

Le texte complet de cet article est disponible en PDF.

Key words : adolescent, adult, complex dermatologic conditions, epidermolysis bullosa, pediatric, transition of care

Plan

Methods

Transition of care literature review: themes applicable to EB

The importance of initiating transition early

Forming an interdisciplinary TOC team

Challenges: insurance, billing, and costs

Discussion

Beyond EB

Future directions: a call to action

	Funding sources: None.
	Conflicts of interest: None disclosed.
	IRB approval: Exempt from review.
	Preliminary information was presented as a poster presentation at the Pediatric Dermatology Research Alliance Conference (November 14-16, 2019, in Chicago, IL).