Information ranks highest: Expectations of female adolescents with a rare genital malformation towards health care services.

ABSTRACT:

Background

Access to highly specialized health care services and support to meet the patient's specific needs is critical for health outcome, especially during age-related transitions within the health care system such as with adolescents entering adult medicine. Being affected by an orphan disease complicates the situation in several important respects. Long distances to dedicated institutions and scarcity of knowledge, even among medical doctors, may present major obstacles for proper access to health care services and health chances. This study is part of the BMBF funded TransCareO project examining in a mixed-method design health care provisional deficits, preferences, and barriers in health care access as perceived by female adolescents affected by the Mayer-Rokitansky-Küster-

SUBMITTER: Simoes E 

PROVIDER: S-EPMC5398506 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature