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脊索瘤患者的生活质量:来自脊索瘤基金会生存调查的结果。

Quality of life in chordoma survivors: results from the Chordoma Foundation Survivorship Survey.

机构信息

1Department of Neurosurgery, Columbia University Medical Center, New York, New York.

2Department of Neurosurgery, Virginia Commonwealth University School of Medicine, Richmond, Virginia.

出版信息

Neurosurg Focus. 2024 May;56(5):E12. doi: 10.3171/2024.2.FOCUS2410.


DOI:10.3171/2024.2.FOCUS2410
PMID:38691854
Abstract

OBJECTIVE: Chordomas are rare malignant bone tumors whose location in the skull base or spine, invasive surgical treatment, and accompanying adjuvant radiotherapy may all lead patients to experience poor quality of life (QOL). Limited research has been conducted on specific demographic and clinical factors associated with decreased QOL in chordoma survivors. Thus, the aim of the present study was to investigate several potential variables and their impact on specific QOL domains in these patients as well the frequencies of specific QOL challenges within these domains. METHODS: The Chordoma Foundation (CF) Survivorship Survey was electronically distributed to chordoma survivors subscribed to the CF Chordoma Connections forum. Survey questions assessed QOL in three domains: physical, emotional/cognitive, and social. The degree of impairment was assessed by grouping the participants into high- and low-challenge groups designated by having ≥ 5 or < 5 symptoms or challenges within a given QOL domain. Bivariate analysis of demographic and clinical characteristics between these groups was conducted using Fisher's exact test and the Mann-Whitney U-test. RESULTS: A total of 665 chordoma survivors at least partially completed the survey. On bivariate analysis, female sex was significantly associated with increased odds of significant emotional (p = 0.001) and social (p = 0.019) QOL burden. Younger survivors (age < 65 years) were significantly more likely to experience significant physical (p < 0.0001), emotional (p < 0.0001), and social (p < 0.0001) QOL burden. Skull base chordoma survivors had significantly higher emotional/cognitive QOL burden than spinal chordoma survivors (p = 0.022), while the converse was true for social QOL challenges (p = 0.0048). Survivors currently in treatment were significantly more likely to experience significant physical QOL challenges compared with survivors who completed their treatment > 10 years ago (p = 0.0074). Fear of cancer recurrence (FCR) was the most commonly reported emotional/cognitive QOL challenge (49.6%). Only 41% of the participants reported having their needs met for their physical QOL challenges as well as 25% for emotional/cognitive and 18% for social. CONCLUSIONS: The authors' findings suggest that younger survivors, female survivors, and survivors currently undergoing treatment for chordoma are at high risk for adverse QOL outcomes. Additionally, although nearly half of the participants reported a FCR, very few reported having adequate emotional/cognitive care. These findings may be useful in identifying specific groups of chordoma survivors vulnerable to QOL challenges and bring to light the need to expand care to meet the QOL needs for these patients.

摘要

目的:脊索瘤是一种罕见的恶性骨肿瘤,其位置在颅底或脊柱,侵袭性的手术治疗以及伴随的辅助放疗都可能导致患者生活质量(QOL)下降。对于与脊索瘤幸存者 QOL 下降相关的特定人口统计学和临床因素,研究有限。因此,本研究的目的是调查这些患者中几个潜在变量及其对特定 QOL 领域的影响,以及这些领域中特定 QOL 挑战的发生频率。

方法:通过电子邮件向订阅 CF 脊索瘤连接论坛的脊索瘤幸存者分发了《脊索瘤基金会(CF)生存调查》。调查问题评估了三个领域的 QOL:身体、情感/认知和社会。通过将参与者分为高挑战组和低挑战组,来评估损伤程度,高挑战组指定在给定的 QOL 领域内有≥ 5 个或< 5 个症状或挑战。使用 Fisher 精确检验和 Mann-Whitney U 检验对这些组之间的人口统计学和临床特征进行了双变量分析。

结果:共有 665 名脊索瘤幸存者至少部分完成了调查。在双变量分析中,女性性别与明显的情绪(p = 0.001)和社会(p = 0.019)QOL 负担增加显著相关。年轻的幸存者(< 65 岁)更有可能经历明显的身体(p < 0.0001)、情绪(p < 0.0001)和社会(p < 0.0001)QOL 负担。颅底脊索瘤幸存者的情绪/认知 QOL 负担明显高于脊柱脊索瘤幸存者(p = 0.022),而社会 QOL 挑战则相反(p = 0.0048)。目前正在接受治疗的幸存者与 10 年前完成治疗的幸存者相比,经历明显的身体 QOL 挑战的可能性显著更高(p = 0.0074)。对癌症复发的恐惧(FCR)是最常见的情绪/认知 QOL 挑战(49.6%)。只有 41%的参与者报告其身体 QOL 挑战的需求得到满足,情绪/认知方面为 25%,社会方面为 18%。

结论:作者的发现表明,年轻的幸存者、女性幸存者和目前正在接受脊索瘤治疗的幸存者发生不良 QOL 结局的风险较高。此外,尽管近一半的参与者报告了 FCR,但很少有人报告有足够的情绪/认知护理。这些发现可能有助于识别易发生 QOL 挑战的特定脊索瘤幸存者群体,并突显需要扩大护理范围以满足这些患者的 QOL 需求。

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