Saket Myneni, Linda Tang, Hanan Akbari, Raquel Mayne, Foad Kazemi, Ruiwen Xiong, Kristin J Redmond, Mark H Bilsky, Raphaële Charest-Morin, Daniel G Tobert, Vikram Chakravarthy, Ganesh M Shankar, Sheng-Fu L Lo, John H Shin, Jean-Paul Wolinsky, Daniel M Sciubba, Ziya L Gokaslan, Nicolas Dea, Daniel Lubelski, A Karim Ahmed, Debraj Mukherjee
{"title":"脊索瘤患者报告结果调查（spCPROS）：一种以患者为中心、疾病特异性的评估脊索瘤患者生活质量的工具。","authors":"Saket Myneni, Linda Tang, Hanan Akbari, Raquel Mayne, Foad Kazemi, Ruiwen Xiong, Kristin J Redmond, Mark H Bilsky, Raphaële Charest-Morin, Daniel G Tobert, Vikram Chakravarthy, Ganesh M Shankar, Sheng-Fu L Lo, John H Shin, Jean-Paul Wolinsky, Daniel M Sciubba, Ziya L Gokaslan, Nicolas Dea, Daniel Lubelski, A Karim Ahmed, Debraj Mukherjee","doi":"10.1007/s11060-025-05181-z","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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).</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":16425,"journal":{"name":"Journal of Neuro-Oncology","volume":" ","pages":"813-824"},"PeriodicalIF":3.1000,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"The Spinal Chordoma Patient Reported Outcome Survey (spCPROS): a patient-centered, disease-specific tool for assessing quality of life in spinal chordoma patients.\",\"authors\":\"Saket Myneni, Linda Tang, Hanan Akbari, Raquel Mayne, Foad Kazemi, Ruiwen Xiong, Kristin J Redmond, Mark H Bilsky, Raphaële Charest-Morin, Daniel G Tobert, Vikram Chakravarthy, Ganesh M Shankar, Sheng-Fu L Lo, John H Shin, Jean-Paul Wolinsky, Daniel M Sciubba, Ziya L Gokaslan, Nicolas Dea, Daniel Lubelski, A Karim Ahmed, Debraj Mukherjee\",\"doi\":\"10.1007/s11060-025-05181-z\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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).</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>We developed a patient-centered tool for measuring QOL specific to spinal chordomas. 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引用次数: 0
摘要
目的：脊索瘤最常见于腰骶棘。脊索瘤和治疗后遗症显著影响生活质量（QOL）由于邻近的主要神经血管结构和积极的管理所必需的。然而，由于没有针对这一人群的有效工具，我们的目标是为脊索瘤患者开发一种新的生活质量指标。方法：对27例脊索瘤患者的访谈记录进行定性分析，确定7个主题的常见症状。针对这些主题的现有工具中的79个项目形成了一份初步问卷，分发给26名不同的脊索瘤患者和11名提供者。受访者以5分的李克特量表对项目的相关性进行评分。平均评分高于3.0就符合相关性阈值。采用双侧Mann-Whitney u检验比较患者和提供者、活动脊柱和骶骨病变之间的评分（显著性水平：0.05）。结果：超过阈值的项目有47项。我们删除了冗余条目，创建了35项脊髓瘤患者报告结果调查（spCPROS）。这些项目被分为8个面向患者的领域：一般(3)、情绪(7)、日常活动(6)、疼痛(4)、睡眠(4)、感觉和运动(9)和社会活动(2)。患者与提供者之间存在显著差异的项目最多的类别包括情绪（42%）、感觉和运动（44%）、疼痛（50%）和社会活动（50%）。4个项目包括膀胱控制（3.53 vs. 1.90, p = 0.03）和肠失禁（4.07 vs. 1.70, p）。结论：我们开发了一种以患者为中心的测量脊髓瘤特异性生活质量的工具。在术前和术后临床接触中使用sppros可以使临床医生有效地评估症状负担，并为高质量的以患者为中心的护理提供指导。
The Spinal Chordoma Patient Reported Outcome Survey (spCPROS): a patient-centered, disease-specific tool for assessing quality of life in spinal chordoma patients.
Purpose: 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.
Methods: 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).
Results: 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.
Conclusion: 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.
期刊介绍：
The Journal of Neuro-Oncology is a multi-disciplinary journal encompassing basic, applied, and clinical investigations in all research areas as they relate to cancer and the central nervous system. It provides a single forum for communication among neurologists, neurosurgeons, radiotherapists, medical oncologists, neuropathologists, neurodiagnosticians, and laboratory-based oncologists conducting relevant research. The Journal of Neuro-Oncology does not seek to isolate the field, but rather to focus the efforts of many disciplines in one publication through a format which pulls together these diverse interests. More than any other field of oncology, cancer of the central nervous system requires multi-disciplinary approaches. To alleviate having to scan dozens of journals of cell biology, pathology, laboratory and clinical endeavours, JNO is a periodical in which current, high-quality, relevant research in all aspects of neuro-oncology may be found.
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