Myneni Saket, Tang Linda, Akbari Hanan, Mayne Raquel, Kazemi Foad, Xiong Ruiwen, Redmond Kristin J, Bilsky Mark H, Charest-Morin Raphaële, Tobert Daniel G, Chakravarthy Vikram, Shankar Ganesh M, Lo Sheng-Fu L, Shin John H, Wolinsky Jean-Paul, Sciubba Daniel M, Gokaslan Ziya L, Dea Nicolas, Lubelski Daniel, Ahmed A Karim, Mukherjee Debraj
Department of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Johns Hopkins University, Bloomberg School of Public Health, Baltimore, MD, USA.
J Neurooncol. 2025 Nov;175(2):813-824. doi: 10.1007/s11060-025-05181-z. Epub 2025 Jul 29.
Chordomas present most frequently in the lumbosacral spine. Spinal chordomas and treatment sequelae significantly affect quality of life (QOL) due to proximity of major neurovascular structures and the aggressive management required. However, since there are no validated instruments for this population, we aimed to develop a novel QOL metric for spinal chordoma patients.
Qualitative analysis of interview transcripts from 27 chordoma patients identified common symptoms categorized into 7 themes. Seventy-nine items from existing instruments addressing these themes formed an initial questionnaire distributed to 26 different spinal chordoma patients and 11 providers. Respondents rated items' relevance on a 5-point Likert scale. An average rating above 3.0 met the relevance threshold. Scores were compared between patients and providers, and mobile spine and sacrum lesions using two-sided Mann-Whitney U-tests (significance level: 0.05).
Forty-seven items surpassed the threshold. We removed redundant items to create the 35-item Spinal Chordoma Patient Reported Outcome Survey (spCPROS). These items were categorized in 8 patient-facing domains: general(3), mood(7), daily activities(6), pain(4), sleep(4), sensory and motor(9), and social activities(2). The categories with the most items with significant patient-provider discrepancies included mood(42%), sensory and motor(44%), pain(50%), and social activities(50%). Four items, including bladder control (3.53 vs. 1.90, p = 0.03) and bowel incontinence (4.07 vs. 1.70, p < 0.01), were more relevant to sacral lesions than mobile spine lesions.
We developed a patient-centered tool for measuring QOL specific to spinal chordomas. Utilizing the spCPROS in preoperative and postoperative clinical encounters may allow clinicians to effectively assess symptom burden and provide guidance for high-quality patient-centered care.
脊索瘤最常发生于腰骶部脊柱。由于主要神经血管结构位置临近以及所需的积极治疗手段，脊柱脊索瘤及其治疗后遗症会显著影响生活质量（QOL）。然而，由于针对该人群尚无经过验证的工具，我们旨在为脊柱脊索瘤患者开发一种新的生活质量指标。
对27例脊索瘤患者的访谈记录进行定性分析，确定了分为7个主题的常见症状。来自现有工具的涉及这些主题的79个条目构成了一份初始问卷，分发给26例不同的脊柱脊索瘤患者和11名医疗服务提供者。受访者根据5点李克特量表对条目的相关性进行评分。平均评分高于3.0即达到相关性阈值。使用双侧曼-惠特尼U检验（显著性水平：0.05）比较患者与医疗服务提供者之间以及活动脊柱和骶骨病变之间的得分。
47个条目超过阈值。我们去除冗余条目以创建35个条目的脊柱脊索瘤患者报告结局调查问卷（spCPROS）。这些条目分为8个面向患者的领域：一般情况（3个）、情绪（7个）、日常活动（6个）、疼痛（4个）、睡眠（4个）、感觉和运动（9个）以及社交活动（2个）。患者与医疗服务提供者之间差异显著的条目最多的类别包括情绪（42%）、感觉和运动（44%）、疼痛（50%）以及社交活动（50%）。包括膀胱控制（3.53对1.90，p = 0.03）和大便失禁（4.07对1.70，p < 0.01）在内的4个条目与骶骨病变的相关性高于活动脊柱病变。
我们开发了一种以患者为中心的工具，用于测量脊柱脊索瘤特有的生活质量。在术前和术后临床诊疗中使用spCPROS可能使临床医生能够有效评估症状负担，并为以患者为中心的高质量护理提供指导。
