Salmi Liz, Otis-Green Shirley, Hayden Adam, Taylor Lynne P, Reblin Maija, Kwan Bethany M
Department of General Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
Collaborative Caring, Toluca Lake, California, USA.
Neurooncol Pract. 2024 Jun 19;11(5):556-565. doi: 10.1093/nop/npae052. eCollection 2024 Oct.
Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods.
Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed "essential elements" of brain cancer PC services.
We engaged an estimated 500 patients, care partners, healthcare professionals, and others with an interest in QoL and PC services for people with malignant brain tumors. Research priorities included testing the early introduction of PC services designed to address the unique QoL needs of brain cancer patients and care partners. Essential elements of brain cancer PC include: (1) addressing brain cancer patients' unique range of QoL needs and concerns, which change over time, (2) tailoring existing services and approaches to patient needs and concerns, (3) enhancing the involvement of interprofessional care team members, and (4) optimizing timing for PC services. This was the first participatory research effort exploring brain cancer patient and care partner QoL needs and PC services.
The brain tumor community calls for research testing PC service models for patients that incorporate the "essential elements" of palliative care.
原发性恶性脑肿瘤（即脑癌）以涉及认知和沟通的特定疾病方式影响患者及其护理伙伴的生活质量（QoL）。姑息治疗（PC）关注患者/护理伙伴的生活质量，但尚不清楚PC如何满足脑癌患者的独特需求。本项目的目的是使用参与式共同设计方法确定脑癌PC研究的重点。
参与式共同设计包括组建一个纵向协作咨询小组、参与框架、设计思维过程以及为期1年的基于社交媒体的参与。将社区确定的脑癌生活质量需求和研究重点映射到脑癌PC服务的拟议“基本要素”上。
我们吸引了约500名患者、护理伙伴、医疗保健专业人员以及其他对恶性脑肿瘤患者的生活质量和PC服务感兴趣的人员参与。研究重点包括测试早期引入旨在满足脑癌患者及其护理伙伴独特生活质量需求的PC服务。脑癌PC的基本要素包括：（1）解决脑癌患者随时间变化的独特生活质量需求和担忧范围，（2）根据患者需求和担忧调整现有服务和方法，（3）加强跨专业护理团队成员的参与，以及（4）优化PC服务时机。这是首次探索脑癌患者及其护理伙伴生活质量需求和PC服务的参与式研究。
脑肿瘤群体呼吁开展研究，测试为患者提供的纳入姑息治疗“基本要素”的PC服务模式。
