Bedoya Sima, Gordon Mallorie, Zabokrtsky Keri, Kasper Kristen, Frediani Jamie, Ruble Kathy, Ciampa Devon, Moynihan Laura, Pao Maryland, Wiener Lori
Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
Children's Hospital of Orange County, Orange, California, USA.
J Palliat Med. 2025 Jan;28(1):92-96. doi: 10.1089/jpm.2024.0177. Epub 2024 Dec 5.
Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of VMC. A structured interview was used alongside two versions of VMC to solicit AYA preferences and feedback regarding content and layout changes. Overall, participants preferred Version 2; and largely agreed on the inclusion of new pages related to their personal information, children, and additional reflections. Most AYAs (95.5%) found the guide helpful for thinking about their care. Study findings support updates to VMC that specifically reflect AYAs end-of-life (EoL) preferences and emphasize the value of engaging AYAs in ACP conversations directly related to their specific concerns, priorities, and preferences. Use of VMC has potential for enhancing overall quality of care and quality of life for AYAs at EoL.
“表达我的选择”(Voicing My CHOiCES,VMC)是一种预先护理计划(ACP)指南,旨在帮助患有严重疾病的青少年和青年(AYA)向他人传达他们的护理偏好。本研究评估了VMC的修订版。除了两个版本的VMC外,还采用了结构化访谈来征求AYA对内容和布局变化的偏好及反馈。总体而言,参与者更喜欢版本2;并且在很大程度上同意纳入与他们的个人信息、子女以及更多思考相关的新页面。大多数AYA(95.5%)认为该指南有助于思考他们的护理问题。研究结果支持对VMC进行更新,以具体反映AYA的临终(EoL)偏好,并强调让AYA参与与其特定担忧、优先事项和偏好直接相关的ACP对话的价值。使用VMC有可能提高AYA临终时的整体护理质量和生活质量。