Department of Neurology, Mayo Clinic, Phoenix, AZ, USA.
Department of Translational Neurosciences, Pacific Neuroscience Institute at Saint John Cancer Institute, Santa Monica, CA, USA.
J Neurooncol. 2021 Apr;152(2):313-323. doi: 10.1007/s11060-021-03700-2. Epub 2021 Jan 23.
Discordant prognostic awareness (PA) can cause distress, impact goals of care and future planning, especially in patients with high grade glioma (pwHGG) who have limited survival. We aimed to evaluate the feasibility of assessing PA of pwHGG, caregivers and clinicians using a single question and to evaluate these responses for discord, alignment and fluctuation over time.
This is a sub-study of an IRB-approved pilot study evaluating early palliative care and longitudinal symptom monitoring via a smart-device tool in 16 pwHGG and their caregivers receiving treatment at the Mayo Clinic Arizona (United States). Eligible patients were ≥ 18 years, English-speaking, newly-diagnosed, and had a willing caregiver. Participants answered a multiple-choice question asking for an estimate of their own or their loved one's survival on a monthly basis.
All except one patient/caregiver dyad answered the question each time it was asked. The question did not appear to cause discomfort or increase conversations with clinicians around prognosis. PA of patients and caregivers fluctuated monthly, ranging from dismal to overtly optimistic, with a discordance frequency of 68%. Patients tended to be more optimistic than caregivers, and a higher QOL correlated to a more optimistic response. Clinicians' were more hopeful; their prediction tended to fluctuate less than those of patients and caregivers.
PA may be assessed in pwHGG and caregivers with a single, frank question. There is clear discordance between PA of patients, their caregivers and clinicians. Understanding fluctuates longitudinally through disease and treatment course. Additional studies on timing and ways of discussing prognosis in this population are needed.
NCT04630379.
不一致的预后意识（PA）可能会引起痛苦，影响患者的治疗目标和未来规划，尤其是对于生存时间有限的高级别胶质瘤（pwHGG）患者。我们旨在评估使用单个问题评估 pwHGG 患者、照护者和临床医生的 PA 的可行性，并评估这些反应在时间上的不一致性、一致性和波动性。
这是一项经过机构审查委员会批准的试点研究的子研究，该研究在美国亚利桑那州梅奥诊所评估了通过智能设备工具对 16 名 pwHGG 及其接受治疗的照护者进行早期姑息治疗和纵向症状监测。符合条件的患者年龄≥18 岁，能说英语，新诊断出患有疾病，且有意愿的照护者。参与者每月回答一个多项选择题，要求他们估计自己或亲人的存活时间。
每次询问时，除了一对患者/照护者之外，所有患者/照护者都回答了这个问题。这个问题似乎没有引起不适，也没有增加与临床医生讨论预后的次数。患者和照护者的 PA 每月波动，从悲观到明显乐观，不一致的频率为 68%。患者比照护者更乐观，更高的生活质量与更乐观的反应相关。临床医生的预测更乐观；他们的预测波动比患者和照护者的预测波动小。
可以通过一个简单、坦率的问题来评估 pwHGG 患者和照护者的 PA。患者、照护者和临床医生的 PA 存在明显的不一致性。通过疾病和治疗过程，理解会随时间而变化。需要在这一人群中进行关于预后讨论时间和方式的进一步研究。
NCT04630379。
