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希望眼镜:儿科肿瘤患者及其父母对预后的看法。

Hope-Colored Glasses: Perceptions of Prognosis Among Pediatric Oncology Patients and Their Parents.

机构信息

Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children's Research Hospital, Memphis, TN.

Department of Pediatrics, Our Lady of the Lake Regional Medical Center, Baton Rouge, LA.

出版信息

JCO Oncol Pract. 2021 Jun;17(6):e730-e739. doi: 10.1200/OP.20.00762. Epub 2021 Mar 4.

DOI:10.1200/OP.20.00762
PMID:33661701
Abstract

PURPOSE

Cancer patients' belief about prognosis can heavily influence medical decision making and goals of care. It is known that parents of children with cancer tend to be optimistic regarding their child's prognosis; however, little is known about pediatric patients' prognostic beliefs, how physicians' prognostic communication is perceived, and how these perceptions are compared with actual prognoses.

PATIENTS AND METHODS

An original survey was administered to 100 pediatric oncology patients, age 10-18 years, and their parents from 2013 to 2015, at St Jude Children's Research Hospital. Patients were eligible for inclusion if they had an oncologic diagnosis, were between 1 month and 1 year from diagnosis, and were English speaking. Survey responses regarding perceived prognosis were compared with actual prognoses as determined from the medical record review and published literature. Analysis included descriptive statistics and association tests.

RESULTS

Nearly half of participants (patients = 48.9%, parents = 50.5%) displayed prognostic optimism as compared with the determined objective estimate of curative potential. The majority of both patients (78%) and parents (85%) reported belief in a very high chance of cure, although fewer reported that their physician communicated a very high chance for cure (patients = 57%, parents = 70%), and only 43% were determined to have a very high probability of cure. Significant differences were noted in prognostic optimism by cancer type ( < .0001); patients with solid tumor were more often optimistic (n = 25, 83.3% optimistic; n = 5, 16.7% accurate), and patients with lymphoma were most often accurate (n = 2, 8.7% optimistic; n = 21, 91.3% accurate).

CONCLUSION

Pediatric oncology patients and parents tend to be optimistic about their chance of cure, as compared to both perceived prognostic communication from physicians and objective estimated prognosis. Understanding the nature of prognostic optimism among patients with cancer and caregivers may empower clinicians to guide realistic decision making while supporting hope.

摘要

目的

癌症患者对预后的信念会极大地影响医疗决策和护理目标。已知癌症患儿的父母往往对孩子的预后持乐观态度;然而,人们对儿科患者的预后信念、医生的预后沟通方式的感知以及这些感知与实际预后的比较知之甚少。

方法

2013 年至 2015 年,在圣裘德儿童研究医院,对 100 名年龄在 10-18 岁之间的儿科肿瘤患者及其父母进行了一项原始调查。如果患者符合以下条件,则有资格入组:患有肿瘤诊断,在诊断后 1 个月至 1 年内,并且会说英语。通过病历回顾和文献查阅来确定实际预后,并将患者对预后的感知与实际预后进行比较。分析包括描述性统计和关联检验。

结果

与从病历回顾和文献查阅确定的治疗潜力的客观估计相比,近一半的参与者(患者为 48.9%,父母为 50.5%)表现出预后乐观。尽管大多数患者(78%)和父母(85%)表示相信治愈的可能性非常高,但报告相信医生传达了非常高的治愈机会的比例较小(患者为 57%,父母为 70%),只有 43%的患者被确定有非常高的治愈概率。不同癌症类型的预后乐观程度存在显著差异(<.0001);实体瘤患者更乐观(25 例,83.3%乐观;5 例,16.7%准确),而淋巴瘤患者更准确(2 例,8.7%乐观;21 例,91.3%准确)。

结论

与医生的预后沟通和客观估计的预后相比,儿科肿瘤患者和父母往往对自己的治愈机会持乐观态度。了解癌症患者和护理人员的预后乐观程度的性质,可以增强临床医生指导现实决策的能力,同时支持希望。

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