Pain care for patients with epidermolysis bullosa: best care practice guidelines.

ABSTRACT:

Background

Inherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi-system effects and patients present with a number of both acute and chronic pain care needs. Effects on quality of life are substantial. Pain and itching are burdensome daily problems. Experience with, and knowledge of, the best pain and itch care for these patients is minimal. Evidence-based best care practice guidelines are needed to establish a base of knowledge and practice for practitioners of many disciplines to improve the quality of life for both adult and pediatric patients with EB.

Methods

The process was begun at the request of Dystrophic Epidermolysis Bullosa Research Association International (DEBRA International), an organization dedicated to improvement of care,

SUBMITTER: Goldschneider KR 

PROVIDER: S-EPMC4190576 | biostudies-literature | 2014 Oct

REPOSITORIES: biostudies-literature