Patient voices on PKU care: Insights from focus groups with current and former patients

Abstract

Many adults with phenylketonuria (PKU) were discharged from clinics before lifelong treatment guidelines and new therapies. As part of the PKU lost to clinical care study, moderated focus groups were conducted to understand why individuals become lost to care and how to maintain patient engagement. Focus groups involved active clinic patients and those lost to PKU care. Discussions revealed desire for enhanced communication, improved support and access, and community connections.

Keywords

• Phenylketonuria
• PKU
• Lost to care
• Lost to followup
• Patient engagement
• Focus group