Patient voices on PKU care: Insights from focus groups with current and former patients
Year: 2024
Type: article
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. • Many adults with phenylketonuria are lost to PKU care. • PKU focus groups highlighted experiences and needs regarding clinic team, access to care, and support systems. • PKU focus groups emphasized significant concerns about consistent access to PKU therapies.
Authors: Emily Zhu, Suzanne Hollander, Stephanie Sacharow
Institutions: Boston Children's Hospital, Harvard University
Language: English
Subfield: Clinical Biochemistry
Domain: Life Sciences
Open Access status: gold
Estimated APC paid: $2,410
Funders: Office of Dietary Supplements, Rare Diseases Clinical Research Network, National Institutes of Health, National Institute of Neurological Disorders and Stroke, National Institute of Child Health and Human Development, National Center for Advancing Translational Sciences, Eunice Kennedy Shriver National Institute of Child Health and Human Development
OpenAlex ID: W4403258601