Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach.
Liz Salmi, Shirley Otis-Green, Adam Hayden, Lynne P Taylor, Maija Reblin, Bethany M Kwan
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引用次数: 0
Abstract
Background: 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.
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.
Results: 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.
Conclusions: The brain tumor community calls for research testing PC service models for patients that incorporate the "essential elements" of palliative care.
背景：原发性恶性脑肿瘤（即脑癌）会影响患者和护理伙伴的生活质量（QoL），具体表现在认知和交流方面。姑息治疗（PC）可解决患者/护理伙伴的生活质量问题，但目前尚不清楚姑息治疗如何满足脑癌患者的独特需求。本项目旨在利用参与式共同设计方法确定脑癌姑息治疗的研究重点：参与式共同设计包括组建一个纵向合作咨询小组、参与框架、设计思维过程以及为期一年的基于社交媒体的参与。社区确定的脑癌 QoL 需求和研究重点被映射到脑癌 PC 服务的拟议 "基本要素 "中：结果：我们与大约 500 名患者、护理合作伙伴、医疗保健专业人员以及其他关注恶性脑肿瘤患者 QoL 和 PC 服务的人员进行了接触。研究重点包括测试早期引入的个人护理服务，这些服务旨在满足脑癌患者和护理伙伴独特的 QoL 需求。脑癌患者个人护理的基本要素包括(1) 满足脑癌患者独特的 QoL 需求和关注，这些需求和关注会随着时间的推移而发生变化；(2) 根据患者的需求和关注调整现有的服务和方法；(3) 加强跨专业护理团队成员的参与；以及 (4) 优化 PC 服务的时间安排。这是探索脑癌患者和护理伙伴 QoL 需求及 PC 服务的首次参与式研究：脑肿瘤社区呼吁开展研究，测试包含姑息治疗 "基本要素 "的患者个人护理服务模式。
期刊介绍：
Neuro-Oncology Practice focuses on the clinical aspects of the subspecialty for practicing clinicians and healthcare specialists from a variety of disciplines including physicians, nurses, physical/occupational therapists, neuropsychologists, and palliative care specialists, who have focused their careers on clinical patient care and who want to apply the latest treatment advances to their practice. These include: Applying new trial results to improve standards of patient care Translating scientific advances such as tumor molecular profiling and advanced imaging into clinical treatment decision making and personalized brain tumor therapies Raising awareness of basic, translational and clinical research in areas of symptom management, survivorship, neurocognitive function, end of life issues and caregiving
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