Ten years of specialized adult care for phenylketonuria - a single-centre experience.

ABSTRACT:

Background

Specialized adult care of phenylketonuria (PKU) patients is of increasing importance. Adult outpatient clinics for inherited errors of metabolism can help to achieve this task, but experience is limited. Ten years after establishment of a coordinated transition process and specialised adult care for inherited metabolic diseases, adult PKU care was evaluated with respect to metabolic control, therapy satisfaction, life satisfaction, sociodemographic data, economical welfare as well as pregnancy outcome.

Methods

All PKU patients transferred from paediatric to adult care between 2005 and 2015 were identified. A retrospective data analysis and a cross-sectional survey in a sub-cohort of 30 patients including a questionnaire for assessing quality of life (FLZm) were pe

SUBMITTER: Mutze U 

PROVIDER: S-EPMC4806494 | biostudies-literature | 2016 Mar

REPOSITORIES: biostudies-literature