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

IF 1.8 4区医学 Q3 GENETICS & HEREDITY

Molecular Genetics and Metabolism Reports Pub Date : 2024-10-09 DOI:10.1016/j.ymgmr.2024.101148

Emily Zhu , Suzanne Hollander , Stephanie Sacharow

引用次数: 0

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.

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患者对 PKU 护理的看法：与现任和前任患者进行的焦点小组讨论的启示

许多患有苯丙酮尿症（PKU）的成年人在终身治疗指南和新疗法出台之前就已经离开了诊所。作为 "PKU 失访者临床护理研究 "的一部分，我们开展了有节制的焦点小组活动，以了解患者失访的原因以及如何保持患者的参与度。参与焦点小组的有活跃的门诊患者和失去北京大学治疗机会的患者。讨论表明，患者希望加强沟通、获得更好的支持和服务，并与社区建立联系。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Molecular Genetics and Metabolism Reports Biochemistry, Genetics and Molecular Biology-Endocrinology

CiteScore

4.00

自引率

5.30%

发文量

105

审稿时长

33 days

期刊介绍： Molecular Genetics and Metabolism Reports is an open access journal that publishes molecular and metabolic reports describing investigations that use the tools of biochemistry and molecular biology for studies of normal and diseased states. In addition to original research articles, sequence reports, brief communication reports and letters to the editor are considered.