Sze Jacqueline, Marisette Stephen, Williams Diane, Nyhof-Young Joyce, Crooks Dauna, Husain Amna, Bezjak Andrea, Wong Rebecca K S
Princess Margaret Hospital, University of Toronto, 5th Floor, 610 University Avenue, M5G 2M9, Toronto, Ontario, Canada.
Support Care Cancer. 2006 Oct;14(10):1055-63. doi: 10.1007/s00520-006-0032-y. Epub 2006 Feb 25.
To explore the major factors important in decision making for whole-brain radiotherapy (WBRT) for patients with brain metastases and their caregivers.
Two parallel qualitative studies, one for patients and one for caregivers of patients with newly diagnosed brain metastases, were conducted. Semistructured interviews were conducted and audiotaped with each participant. Content analysis and theme extraction of the transcripts were undertaken to identify recurring themes and relational patterns.
Twenty patients and 19 caregivers (including eight patient and caregiver pairs) were recruited into the study. Four major factors were identified to influence decision making of whole-brain radiation: hope, knowledge, expectations of radiation therapy, and current symptoms. Analysis reveals that patients generally focus on current informational needs, while caregivers want more information about the future (e.g., life expectancy and anticipated symptoms). Caregivers expressed frustration when unable to explore future needs because patients were unprepared to discuss prognostic issues. Participants expressed substantial relief when offered WBRT after the diagnosis, but WBRT is often considered the only available plan rather than an informed choice.
Given the importance of caregivers in the care of patients with brain metastases, fulfilling their unique informational needs appears to require more attention. The blurred boundary between hopes and expectations for WBRT creates unique challenges in joint treatment decision making for patients with brain metastases and their caregivers.
探讨脑转移瘤患者及其照护者在全脑放疗（WBRT）决策中重要的主要因素。
开展了两项平行的定性研究，一项针对患者，另一项针对新诊断脑转移瘤患者的照护者。对每位参与者进行了半结构化访谈并录音。对访谈记录进行内容分析和主题提取，以识别反复出现的主题和关系模式。
20例患者和19名照护者（包括8对患者与照护者）被纳入研究。确定了影响全脑放疗决策的四个主要因素：希望、知识、对放疗的期望以及当前症状。分析显示，患者通常关注当前的信息需求，而照护者希望获得更多关于未来的信息（如预期寿命和预期症状）。当因患者未准备好讨论预后问题而无法探讨未来需求时，照护者会感到沮丧。诊断后提供WBRT时，参与者表示极大的宽慰，但WBRT通常被视为唯一可行的方案，而非经过充分了解后的选择。
鉴于照护者在脑转移瘤患者护理中的重要性，满足他们独特的信息需求似乎需要更多关注。对WBRT的希望和期望之间模糊的界限，给脑转移瘤患者及其照护者的联合治疗决策带来了独特的挑战。
