Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego, CA, USA.
Psychooncology. 2018 Mar;27(3):817-823. doi: 10.1002/pon.4581. Epub 2017 Dec 19.
OBJECTIVE: Malignant glioma (MG) is a devastating neuro-oncologic disease with almost invariably poor prognosis, yet many families facing malignant glioma have poor prognostic awareness (PA), or the awareness of the patient's incurable disease and shortened life expectancy. Accurate PA is associated with favorable medical outcomes at end-of-life for patients and psychosocial outcomes for informal caregivers (ICs) through bereavement. To date, however, no study has specifically examined PA among MG ICs and the information they receive that shapes their awareness. METHODS: Thirty-two ICs of patients with malignant glioma completed a semi-structured assessment of their awareness of the incurability and life expectancy of their loved one's illness, and to understand their sources of prognostic information and preferences for communication of prognostic information. RESULTS: Twenty-two (69%) ICs had full PA-awareness of the incurability of malignant glioma and accurate estimates of their loved ones' life expectancy. Twenty-three (72%) felt that prognostic information was extremely or very important to possess, and 16 (50%) desired more prognostic information. The majority of ICs received prognostic information from physicians and the Internet. Qualitative analyses revealed that many ICs had difficulty navigating medical encounters in which they concurrently wanted to elicit prognostic information from physicians and protect patients from such information. CONCLUSIONS: Accurate and timely PA is necessary for ICs to serve as critical members of health care teams. Interventions are needed to foster ICs' skills in navigating prognostic communication with patients and health care providers and thereby improve their ability to advocate for their loved one's wishes.
目的:恶性胶质瘤(MG)是一种毁灭性的神经肿瘤疾病,预后几乎总是很差,但许多面临恶性胶质瘤的家庭对预后的认识较差(PA),即对患者无法治愈的疾病和预期寿命缩短的认识。准确的 PA 与患者临终时的有利医疗结果以及非正式照护者(ICs)的心理社会结果相关,因为他们经历了丧亲之痛。然而,迄今为止,尚无研究专门探讨 MG-ICs 的 PA 及其获得的相关预后信息。
方法:32 名恶性胶质瘤患者的 IC 完成了对其亲人疾病不可治愈性和预期寿命的认识的半结构化评估,并了解了他们获取预后信息的来源和对预后信息交流的偏好。
结果:22 名(69%)IC 对恶性胶质瘤的不可治愈性和对亲人预期寿命的准确估计有充分的 PA 意识。23 名(72%)认为预后信息对他们来说非常重要或极其重要,16 名(50%)希望获得更多的预后信息。大多数 IC 从医生和互联网获得预后信息。定性分析表明,许多 IC 在同时希望从医生那里获取预后信息并保护患者免受此类信息影响的医疗接触中感到困难。
结论:准确和及时的 PA 是 IC 作为医疗团队重要成员的必要条件。需要干预措施来培养 IC 与患者和医疗保健提供者进行预后沟通的技能,从而提高他们为亲人的意愿辩护的能力。
Psychooncology. 2017-12-19
J Neurooncol. 2010-12-14
Palliat Med. 2010-2-1
J Neurosci Nurs. 2018-4
J Adv Pract Oncol. 2023-5
Front Oncol. 2023-2-14
J Pain Symptom Manage. 2023-5
Evid Based Complement Alternat Med. 2022-4-27
J Pain Symptom Manage. 2017-2
J Pain Symptom Manage. 2012-7-28