Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers
Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers
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DOI：
10.1007/s40271-019-00384-9
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发表时间：
2020-02-01
影响因子：
3.6
通讯作者：
Gater, Adam
中科院分区：
文献类型：
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作者：
Crawford, Rebecca;Sully, Kate;Gater, Adam
对于成人急性髓系白血病患者，与治疗和生存相关的期望以及影响治疗决策的因素尚不清楚。这项研究综合分析了有针对性的文献综述的结果以及 YouTube 上分享的患者报告信息，以进一步了解患者对血液癌症（特别是急性髓系白血病）的看法。有针对性的文献综述包括有关患者（年龄 >= 18 岁）在急性髓性白血病或其他血液癌症中的经历或观点的文章。 YouTube 视频选择标准包括自我报告的急性髓系白血病患者（年龄 >= 60 岁）。总共确定了 26 篇文章（13 篇急性髓系白血病特异性文章和 14 篇其他血液癌症，其中一篇与这两个人群相关）和 28 个与 10 名独特患者/护理人员相关的视频。患者报告的关键概念包括对实现个人和/或生命里程碑的生存价值的感知、诊断时的情绪/心理困扰以及预期寿命/预后的不确定性。可能延缓病情进展和延长生命的有效疗法对患者非常重要；然而，这些都是从对生活质量的影响和对日常生活的干扰方面考虑的。许多患者对缺乏治疗选择、副作用的可能性以及他们的诊断和治疗将如何影响人际关系、日常生活和完成某些任务的能力表示担忧。这两个数据源都提供了关于患者对血液癌症（特别是急性髓系白血病）的经历和看法及其治疗的宝贵而丰富的信息。进一步了解这些见解可以帮助临床医生、患者及其护理人员之间就治疗决策进行讨论，突出临床研究中对患者重要的结果，并最终为以患者为中心的药物开发和评估提供信息。
Expectations relating to treatment and survival, and factors influencing treatment decisions are not well understood in adult patients with acute myeloid leukemia. This study analyzed combined findings from a targeted literature review with patient-reported information shared on YouTube to further understand patient perspectives in hematologic cancers and, in particular, acute myeloid leukemia. The targeted literature review included articles concerning patient (aged >= 18 years) experiences or perspectives in acute myeloid leukemia or other hematologic cancers. YouTube video selection criteria included patients (aged >= 60 years) with self-reported acute myeloid leukemia. In total, 26 articles (13 acute myeloid leukemia-specific and 14 other hematologic cancers, with one relevant to both populations) and 28 videos pertaining to ten unique patients/caregivers were identified. Key concepts reported by patients included the perceived value of survival for achieving personal and/or life milestones, the emotional/psychological distress of their diagnosis, and the uncertainties about life expectancy/prognosis. Effective therapies that could potentially delay progression and extend life were of great importance to patients; however, these were considered in terms of quality-of-life impact and disruption to daily life. Many patients expressed concerns regarding the lack of treatment options, the possibility of side effects, and how their diagnosis and treatment would affect relationships, daily lives, and ability to complete certain tasks. Both data sources yielded valuable and rich information on the patient experience and perceptions of hematologic cancers, in particular for acute myeloid leukemia, and its treatments. Further understanding of these insights could aid discussions between clinicians, patients, and their caregivers regarding treatment decisions, highlight outcomes of importance to patients in clinical studies, and ultimately, inform patient-focused drug development and evaluation.