Loughan Ashlee R, Reid Morgan, Willis Kelcie D, Barrett Sarah, Lo Karen
School of Medicine, Virginia Commonwealth University, Richmond, Virginia, USA.
Massey Cancer Center, Richmond, Virginia, USA.
Neurooncol Pract. 2022 Sep 7;10(1):71-78. doi: 10.1093/nop/npac067. eCollection 2023 Feb.
To achieve patient-centric quality care in neuro-oncology, all aspects of the disease and its impact on quality survival need to be considered. This includes the psychological consequences of a brain tumor diagnosis and subsequent life-altering experiences. Far too often the voice of our patients is unheard. Empowering patients to advocate for their own psychological needs is essential.
Data were derived from four focus groups with adult patients with brain tumors ( = 15; = 46 years, 53% female). A trained moderator led each 90-min group and posed semi-structured questions regarding patients' care needs throughout their neuro-oncological disease trajectory. Emphasis was placed on the quality of life and distress reduction. Common themes were identified via thematic content analysis using NVivo software. A high inter-rater reliability ( = 0.92, range = 0.85-0.93) was achieved. Two themes are presented here: Emotional Response to Stressors and Existential Considerations.
Of the two themes presented, 14 codes emerged. Codes were classified into three broad categories: Fear, Despair, and Resilience. The frequency of each category ranged from 31.4% to 34.7%. Example quotes and a discussion of each category follows.
It is imperative that we include the patient perspective in the development of neuro-oncology programs, thereby considering the of survival in addition to quantity. Neuro-oncology quality care must be driven by our patients' experiences and should integrate support for emotional distress while promoting resilience throughout this life-threatening illness.
为了在神经肿瘤学中实现以患者为中心的优质护理，需要考虑疾病的各个方面及其对生存质量的影响。这包括脑肿瘤诊断的心理后果以及随后改变生活的经历。我们的患者的声音常常未被倾听。使患者能够倡导自身的心理需求至关重要。
数据来自四个针对成年脑肿瘤患者的焦点小组（n = 15；平均年龄 = 46岁，53%为女性）。一名经过培训的主持人主持每个90分钟的小组，并就患者在整个神经肿瘤疾病轨迹中的护理需求提出半结构化问题。重点放在生活质量和减轻痛苦上。通过使用NVivo软件的主题内容分析确定共同主题。实现了较高的评分者间信度（κ = 0.92，范围 = 0.85 - 0.93）。这里呈现两个主题：对压力源的情绪反应和存在性考量。
在所呈现的两个主题中，出现了14个编码。编码被分为三大类：恐惧、绝望和恢复力。每类的频率在31.4%至34.7%之间。以下是每个类别的示例引述及讨论。
我们必须将患者的观点纳入神经肿瘤学项目的制定中，从而除了考虑生存数量外还要考虑生存质量。神经肿瘤学优质护理必须由我们患者的经历驱动，并且应该在这种危及生命的疾病中在促进恢复力的同时整合对情绪困扰的支持。
