Evidence map›Paper›PMID 39971845›Full record

ArticleJournal of neuro-oncology2025

The skull base chordoma patient reported outcome survey (sbCPROS): a patient-centered, disease-specific tool for assessing quality of life in chordoma patients.

Saket Myneni, Linda Tang, Hanan Akbari, Raquel Mayne, A Karim Ahmed, Foad Kazemi, Nicolas Dea, Nathan T Zwagerman, Shirley Y Su, Garret Choby and 6 more

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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.

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1 · What the graph read from it

What it found

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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

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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

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4 · The record

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5 · Who and what money

Authors and funding

16 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 MayneDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
A Karim AhmedDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Foad KazemiDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Nicolas DeaDepartment of Neurosurgery, The University of British Columbia, Vancouver, BC, Canada.
Nathan T ZwagermanDepartment of Neurosurgery, Medical College of Wisconsin, Milwaukee, WI, USA.
Shirley Y SuDepartment of Otolaryngology - Head & Neck Surgery, MD Anderson Cancer Center, Houston, TX, USA.
Garret ChobyDepartment of Otolaryngology - Head & Neck Surgery, University of Pittsburgh, Pittsburgh, PA, USA.
Eric W WangDepartment of Otolaryngology - Head & Neck Surgery, University of Pittsburgh, Pittsburgh, PA, USA.
Kristin J RedmondDepartment of Radiation Oncology, Johns Hopkins University, Baltimore, MD, USA.
Erin L McKeanDepartment of Otolaryngology - Head & Neck Surgery, University of Michigan, Ann Arbor, MI, USA.
Carl H SnydermanDepartment of Otolaryngology - Head & Neck Surgery, University of Pittsburgh, Pittsburgh, PA, USA.
Nicholas R RowanDepartment of Otolaryngology - Head & Neck Surgery, 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 are rare malignant tumors arising from the embryological notochord that present most frequently in the lumbosacral spine, followed by the skull base, with an overall 1/1,000,000 incidence. These tumors and their treatment significantly affect quality of life (QOL) due to intricate anatomical locations and aggressive treatment regimens. Despite these challenges, there are currently no disease-specific patient-reported outcome (PRO) surveys for chordomas. We aimed to develop a tool to assess QOL in patients with skull base chordomas (sbCs).

methodsTwenty-seven patients who underwent sbC resection were interviewed on QOL throughout their care. Grounded-theory analysis of interview transcripts generated 7 themes. We developed an initial survey with 79 items from existing general and anatomic-specific QOL assessment tools addressing these themes. Ten chordoma providers and 10 new patients completed an anonymous Qualtrics survey, rating items' relevance on a 5-point Likert scale to validate survey content. An a priori cutoff of > 3.0 was used for significant relevance. Mean relevance scores for each item were compared between providers and patients as well as between skull base respondents and 5 control patients with lumbar spine and sacral chordomas, using two-sided Mann-Whitney U-tests.

resultsSeventy-four items reached the relevance threshold. These were consolidated to create the final 42-item Skull Base Chordoma Patient Reported Outcome Survey (sbCPROS). Providers significantly overvalued items related to the themes of pain (73%), sleep changes (60%), and sensory & motor symptoms (43%) relative to patients. Ten items were more relevant to skull base patients than patients with spinal tumors (p < 0.05).

conclusionThe authors developed a novel patient-centered, disease-specific PRO instrument to assess change in QOL for sbC patients over time. sbCPROS may provide significant insight into the delivery of high quality care for patients with sbCs and guide patient-physician discussions about care decision-making.

Indexed as

ChordomaPatient Reported Outcome MeasuresQuality of LifeSkull Base NeoplasmsAdultAgedFemaleHumansMaleMiddle AgedSurveys and QuestionnairesYoung AdultChordomaOncologyPatient-reported outcomeQuality of lifeResectionSkull base

Identifiers

PMID39971845

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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.