Evidence map›Paper›PMID 41143938›Full record

ArticleJournal of neuro-oncology2025

The Craniopharyngioma Quality of Life (C-QOL) Index: a preliminary disease-specific, patient-centered tool for assessing patient reported outcomes in adult craniopharyngioma patients.

Saket Myneni, Shaan Bhandarkar, Hanan Akbari, Raquel Mayne, A Karim Ahmed, Foad Kazemi, João Paulo Almeida, Anand V Germanwala, Andrew S Venteicher, Nathan T Zwagerman 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. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

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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

16 authors.

Saket MyneniDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Shaan BhandarkarDepartment 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.
A Karim AhmedDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
Foad KazemiDepartment of Neurosurgery, Johns Hopkins University, Baltimore, MD, USA.
João Paulo AlmeidaDepartment of Neurosurgery, Indiana University, Indianapolis, IN, USA.
Anand V GermanwalaDepartment of Neurosurgery, Loyola University Chicago, Chicago, IL, USA.
Andrew S VenteicherDepartment of Neurosurgery, University of Minnesota, Minneapolis, MN, USA.
Nathan T ZwagermanDepartment of Neurosurgery, Medical College of Wisconsin, Milwaukee, WI, USA.
Eric W WangDepartment of Otolaryngology - Head & Neck Surgery, University of Pittsburgh, Pittsburgh, PA, USA.
Garret ChobyDepartment of Otolaryngology - Head & Neck Surgery, University of Pittsburgh, Pittsburgh, PA, USA.
Erin L McKeanDepartment of Otolaryngology - Head & Neck Surgery and Neurosurgery, 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. drraj@jhmi.edu.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveCraniopharyngiomas have a profound impact on patient quality of life (QoL), due to their proximity to critical neurovascular structures and impact on pituitary function. Despite the significant symptom burden before and after resection, there is no disease-specific instrument to evaluate outcomes. We aimed to develop a patient-centered tool to assess QoL in craniopharyngioma patients.

methodsTwenty-six adult craniopharyngioma patients who underwent resection were interviewed about symptoms impacting their QoL. Qualitative analysis of interviews generated 5 themes. A 64-item survey was compiled with items from previously validated general and skull base-specific QoL tools addressing these themes. These items' relevance was evaluated by 27 new patients and 11 surgeons on a 5-point Likert scale. An a-priori threshold of mean relevance score > 3.0 was used, based on prior studies. Mann-Whitney U-tests were used to compare mean relevance scores between patients and providers, otolaryngologists and neurosurgeons, and patients receiving only surgery and those receiving adjuvant radiation (p < 0.05).Craniopharyngiomas have a profound impact on patient quality of life (QoL), due to their proximity to critical neurovascular structures and impact on pituitary function. Despite the significant symptom burden before and after resection, there is no disease-specific instrument to evaluate outcomes. We aimed to develop a patient-centered tool to assess QoL in craniopharyngioma patients.

resultsFifty-four items met criteria for inclusion. Redundant items were removed to create the 39-item Craniopharyngioma Quality of Life (C-QOL) instrument. Patients and providers had significant differences in their rating of items related to sensory/numbness (25%), general (33%), personality changes (37.5%), and pain (50%). Neurosurgeons placed more emphasis on patient's irritability (4.400 vs. 3.333, p = 0.032) and balance (4.200 vs. 3.167, p = 0.027) compared to otolaryngologists. Adjuvant radiotherapy did not significantly change patients' rating of items.

conclusionsThe C-QOL metric is a novel patient-derived instrument to evaluate QoL in craniopharyngioma patients. Using this tool may realign patient-provider discussions and guide clinical decision-making.

Indexed as

CraniopharyngiomaPatient Reported Outcome MeasuresPituitary NeoplasmsQuality of LifeAdultAgedFemaleHumansMaleMiddle AgedSurveys and QuestionnairesYoung AdultCraniopharyngiomaOncologyPatient-reported outcomeQuality of lifeResectionSkull base

Identifiers

PMID41143938

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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.