Salmi Liz, Lum Hillary D, Hayden Adam, Reblin Maija, Otis-Green Shirley, Venechuk Grace, Morris Megan A, Griff Megan, Kwan Bethany M
Department of General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts.
VA Geriatric Research Education and Clinical Center, Rocky Mountain Regional VA Medical Center, Aurora, Colorado.
Neurooncol Pract. 2020 Jul 29;7(6):676-684. doi: 10.1093/nop/npaa043. eCollection 2020 Dec.
Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients.
The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes.
Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs.
In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.
需要开展研究以完善姑息治疗模式，该模式应满足脑肿瘤患者及其照护伙伴全方位的生活质量（QoL）需求。利益相关者参与研究可为研究重点提供信息；通过社交媒体进行的参与可补充利益相关者小组的作用。本文旨在描述如何利用推特来补充面对面的利益相关者参与，并报告对关于脑肿瘤患者生活质量需求和姑息治疗机会的推文聊天进行定性分析得出的新出现主题。
脑癌生活质量协作组织通过推特聊天，让脑肿瘤（#BTSM）和姑息医学（#HPM）利益相关者群体参与进来。#BTSM聊天聚焦于脑肿瘤患者生活质量的定义和交流。#HPM聊天讨论了针对面临神经疾病的患者的姑息治疗交流。采用定性内容分析法来确定推文聊天主题。
分析表明，脑肿瘤患者及其照护伙伴的生活质量包括心理社会、身体和认知方面的担忧。令人困扰的担忧包括行为改变、对身份丧失的悲伤、人际关系的变化、抑郁和焦虑。患者赞赏医护人员在治疗早期就讨论生活质量，并强调需要照护伙伴的支持。关于生活质量和姑息治疗的交流依赖于各种关系，以满足患者不断变化的需求。
除了提供神经和症状管理外，针对脑肿瘤患者的专科姑息治疗可能还需满足患者及其照护伙伴未得到满足的心理社会和信息需求。事实证明，利用推特让利益相关者参与有助于确定研究重点，并了解利益相关者对生活质量和姑息治疗的看法。
