Our lives with PKU: German patient voices - "Nothing about us without us".

ABSTRACT:

Objectives

Many publications describe experiences of healthcare professionals (HCPs) on managing phenylketonuria (PKU), but literature on the perspectives of individuals with PKU is limited. Nevertheless, patient insights and strategies to address challenges of living with PKU can provide guidance to HCPs and the PKU community to further optimise PKU care.

Methods

A virtual meeting was held to elucidate the lived experience of patients with PKU and brainstorm best practice recommendations from the patient perspective. The meeting was moderated by a psychologist and attended by seven adults with PKU and one caregiver. Based on the outcomes of this meeting and subsequent online rating rounds, consensus statements (≥75 % agreement) reflecting patient focused considerations were

SUBMITTER: Lange K 

PROVIDER: S-EPMC11925542 | biostudies-literature | 2025 Jun

REPOSITORIES: biostudies-literature