The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers.

ABSTRACT:

Background

Little information is available regarding the burden of living with and managing epidermolysis bullosa, including the distinct challenges faced by patients with different disease types/subtypes.

Methods

A 90-question/item survey was developed to collect demographics, diagnostic data, management practices, and burden of illness information for patients with epidermolysis bullosa living in the United States. Recruitment was conducted via email and social media in partnership with epidermolysis bullosa patient advocacy organizations in the United States, and the survey was conducted via telephone interview by a third-party health research firm. Respondents aged ≥ 18 years with a confirmed diagnosis of epidermolysis bullosa or caring for a patient with a confirmed dia

SUBMITTER: Bruckner AL 

PROVIDER: S-EPMC6942340 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature