Evidence map›Paper›PMID 40728757›Full record

ArticleJournal of neuro-oncology2025

The Spinal Chordoma Patient Reported Outcome Survey (spCPROS): a patient-centered, disease-specific tool for assessing quality of life in spinal chordoma patients.

Saket Myneni, Linda Tang, Hanan Akbari, Raquel Mayne, Foad Kazemi, Ruiwen Xiong, Kristin J Redmond, Mark H Bilsky, Raphaële Charest-Morin, Daniel G Tobert and 11 more

Abstract read
PubMed Publisher
In one paragraph

Article in Journal of neuro-oncology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

21 authors.

Saket MyneniDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Linda TangDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Hanan AkbariDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Raquel MayneJohns Hopkins University, Bloomberg School of Public Health, Baltimore, MD, USA.
Foad KazemiDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Ruiwen XiongDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Kristin J RedmondDepartment of Radiation Oncology, Johns Hopkins University, Baltimore, MD, USA.
Mark H BilskyDepartment of Neurosurgery, Memorial Sloan Kettering, New York City, NY, USA.
Raphaële Charest-MorinDepartment of Neurosurgery, The University of British Columbia, Vancouver, BC, Canada.
Daniel G TobertDepartment of Orthopaedic Surgery, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Vikram ChakravarthyDepartment of Neurosurgery, The Ohio State University Wexner Medical Center, Columbus, OH, USA.
Ganesh M ShankarDepartment of Neurosurgery, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Sheng-Fu L LoDepartment of Neurosurgery, Zucker School of Medicine at Hofstra, Long Island Jewish Medical Center and North Shore University Hospital, Northwell Health, Manhasset, NY, USA.
John H ShinDepartment of Spine & Peripheral Nerve Surgery, Penn Medicine, University of Pennsylvania Health System, Philadelphia, PA, USA.
Jean-Paul WolinskyDepartment of Neurological Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Daniel M SciubbaDepartment of Neurosurgery, Zucker School of Medicine at Hofstra, Long Island Jewish Medical Center and North Shore University Hospital, Northwell Health, Manhasset, NY, USA.
Ziya L GokaslanDepartment of Neurosurgery, The Warren Alpert Medical School of Brown University, Providence, RI, USA.
Nicolas DeaDepartment of Neurosurgery, The University of British Columbia, Vancouver, BC, Canada.
Daniel LubelskiDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
A Karim AhmedDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Debraj MukherjeeDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA. dmukher1@jhmi.edu.ORCID https://orcid.org/0000-0002-5403-8237

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeChordomas 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.

methodsQualitative 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).

resultsForty-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.

conclusionWe 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.

Indexed as

ChordomaPatient Reported Outcome MeasuresQuality of LifeSpinal NeoplasmsAdultAgedFemaleHumansMaleMiddle AgedSurveys and QuestionnairesYoung AdultChordomaOncologyPatient-reported outcomeQuality of lifeResectionSpine

Identifiers

PMID40728757

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.