Prognostic awareness and communication preferences among caregivers of patients with malignant glioma.
Prognostic awareness and communication preferences among caregivers of patients with malignant glioma.
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DOI：
10.1002/pon.4581
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发表时间：
2018-03
期刊：
影响因子：
3.6
通讯作者：
Diamond EL
中科院分区：
文献类型：
--
作者：
Applebaum AJ;Buda K;Kryza-Lacombe M;Buthorn JJ;Walker R;Shaffer KM;D'Agostino TA;Diamond EL
恶性胶质瘤是一种预后极差的神经肿瘤性疾病，但许多家庭对恶性胶质瘤的预后意识（PA）较差，或对患者的不治之症和预期寿命缩短的认识。准确的PA与患者临终时的良好医疗结果和非正式照顾者（IC）通过丧亲之痛的心理社会结果相关。然而，到目前为止，没有研究专门研究PA的MG IC和他们收到的信息，塑造他们的意识。32例恶性胶质瘤患者的IC完成了半结构化评估，评估他们对亲人疾病的不可治愈性和预期寿命的认识，并了解他们的预后信息来源和预后信息沟通偏好。22例（69%）IC对恶性胶质瘤的不可治愈性有充分的PA -意识，并准确估计了他们所爱的人的预期寿命。23例（72%）认为预后信息是非常或非常重要的拥有，16例（50%）希望更多的预后信息。大多数IC从医生和互联网获得预后信息。定性分析显示，许多IC有困难的导航医疗遭遇，他们同时希望从医生那里获得预后信息，并保护患者免受这些信息。准确和及时的PA是IC作为医疗团队的关键成员所必需的。需要采取干预措施来培养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愿望辩护的能力。
Malignant glioma 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 the 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. 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. 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. Accurate and timely PA is necessary for ICs to serve as critical members of healthcare teams. Interventions are needed to foster ICs’ skills in navigating prognostic communication with patients and healthcare providers and thereby improve their ability to advocate for their loved one’s wishes.
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影响因子：
120.7
作者：
Phelps, Andrea C.;Maciejewski, Paul K.;Prigerson, Holly G.
通讯作者：
Prigerson, Holly G.
影响因子：
28.4
作者：
Epstein RM;Duberstein PR;Fenton JJ;Fiscella K;Hoerger M;Tancredi DJ;Xing G;Gramling R;Mohile S;Franks P;Kaesberg P;Plumb S;Cipri CS;Street RL Jr;Shields CG;Back AL;Butow P;Walczak A;Tattersall M;Venuti A;Sullivan P;Robinson M;Hoh B;Lewis L;Kravitz RL
通讯作者：
Kravitz RL
影响因子：
3.9
作者：
Diamond, Eli L.;Corner, Geoffrey W.;De Rosa, Antonio;Breitbart, William;Applebaum, Allison J.
通讯作者：
Applebaum, Allison J.
影响因子：
3.6
作者：
Lichtenthall, Wendy G.;Nilsson, Matthew;Zhang, Baohui;Trice, Elizabeth D.;Kissane, David W.;Breitbart, William;Prigerson, Holly G.
通讯作者：
Prigerson, Holly G.
影响因子：
3.9
作者：
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通讯作者：
Nowak, A. K.