Evidence map›Paper›PMID 40293144›Full record

ArticleNeuro-oncology2025

Establishing the content validity of patient-reported outcome measures used in neuro-oncology based on the WHO ICF framework: Part of the RANO-PRO initiative.

Ogechukwu A Asogwa, Linda Dirven, Tobias Walbert, Terri S Armstrong, David Arons, Martin J van den Bent, Jaishri Blakeley, Marijke B Coomans, Paul D Brown, Helen Bulbeck and 19 more

Abstract readValidation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Neuro-oncology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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

29 authors.

Ogechukwu A AsogwaDepartment of Neurology, Leiden University Medical Center, Leiden, the Netherlands.ORCID 0000-0001-6300-332X
Linda DirvenDepartment of Neurology, Leiden University Medical Center, Leiden, the Netherlands.
Tobias WalbertDepartment of Neurology and Neurosurgery, Henry Ford Health System, Wayne State University and Michigan State University, Detroit, Michigan, USA.ORCID 0000-0003-0667-8106
Terri S ArmstrongNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
David AronsNational Brain Tumor Society, Newton, Massachusetts, USA.
Martin J van den BentDepartment of Neurology, Erasmus MC Cancer Institute, Rotterdam, the Netherlands.
Jaishri BlakeleyDepartment of Neurology, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.ORCID 0000-0002-1049-0993
Marijke B CoomansDepartment of Neurology, Leiden University Medical Center, Leiden, the Netherlands.
Paul D BrownDepartment of Radiation Oncology, Mayo Clinic, Rochester, Minnesota, USA.
Helen BulbeckBrainstrust-The Brain Cancer People, Cowes, Isle of Wight, UK.ORCID 0000-0002-6775-5251
Susan M ChangDivision of Neuro-Oncology, Department of Neurological Surgery, University of California, San Francisco, California, USA and UCSF Brain Tumor Center, University of California, San Francisco, California, USA.
Corneel CoensStatistical Department, European Organization for Research and Treatment of Cancer Headquarters, Brussels, Belgium.
Mark R GilbertNeuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.ORCID 0000-0003-2556-9722
Robin GrantDepartment of Clinical Neurosciences, Royal Infirmary of Edinburgh, Edinburgh, UK.ORCID 0000-0003-2597-9510
Rakesh JalaliNeuro-Oncology Cancer Management Team, Apollo Proton Cancer Centre, Chennai, India.ORCID 0000-0002-0318-5536
Johan A F KoekkoekDepartment of Neurology, Leiden University Medical Center, Leiden, the Netherlands.
Pankaj Kumar PandaClinical Research Secretariat, Apollo Proton Cancer Centre, Chennai, India.
Danielle LeachNational Brain Tumor Society, Newton, Massachusetts, USA.
Heather LeeperDepartment of Neurology and Department of Medicine, Section of Geriatrics and Palliative Medicine, University of Chicago, Chicago, Illinois, USA.
Tito MendozaOffice of Patient-Centered Outcomes Research, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
Lakshmi NayakCenter for Neuro-Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.ORCID 0000-0003-2725-8717
Kathy OliverInternational Brain Tumour Alliance, Tadworth, Surrey, UK.
Jaap C ReijneveldDepartment of Neurology, Stichting Epilepsie Instellingen Nederland (SEIN), Heemstede, the Netherlands.
Emilie Le RhunDepartment of Neurology, Clinical Neuroscience Center, University Hospital and University of Zurich, Zurich, Switzerland.ORCID 0000-0002-9408-3278
Larry RubinsteinBiometric Research Program, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
Jennie W TaylorDivision of Neuro-Oncology, Department of Neurological Surgery, University of California, San Francisco, California, USA and UCSF Brain Tumor Center, University of California, San Francisco, California, USA.ORCID 0000-0003-3980-5626
Michael WellerDepartment of Neurology, Clinical Neuroscience Center, University Hospital and University of Zurich, Zurich, Switzerland.ORCID 0000-0002-1748-174X
Patrick Y WenCenter for Neuro-Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Martin J B TaphoornDepartment of Neurology, Leiden University Medical Center, Leiden, the Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundInstruments to assess patient-reported outcomes (PRO) should generate high-quality evidence. Reliable PRO evidence is essential to policymakers, in conjunction with outcomes such as survival and radiological response, to understand the net clinical benefit of antitumor treatments. This study aimed to establish the content validity of 215 identified PRO measures used in patients with brain tumors.

methodsA survey (n = 148 items) was developed reflecting aspects of the WHO International Classification of Functioning, Disability, and Health (ICF) framework. Patients with brain tumors, their proxies, and healthcare professionals (HCPs) were asked to rate each survey item on relevance. An item was considered a relevant issue if ≥25% of the patients or proxies or ≥50% of the HCPs considered that item to be an issue. Next, all items in the identified PRO measures were linked to ICF and relevant items in the survey, and the percentage of content coverage was calculated.

resultsIn total, 114 patients, 71 proxies, and 65 HCPs from different countries completed the survey. Fifty-six of 148 (37.8%) items in the survey were considered relevant. The most important aspects mentioned by both patients and proxies were difficulty concentrating, difficulty remembering, multitasking, and handling stress. Depending on the definition, between 35% and 49% of PRO measures were considered to have sufficient content validity (≥80% coverage).

conclusionThe content validity was insufficient in more than half of the identified PRO measures, particularly multidimensional measures. Future research should investigate whether different approaches to PRO assessment better meet the needs of all stakeholders.

Indexed as

Brain NeoplasmsPatient Reported Outcome MeasuresAdultAgedFemaleHumansInternational Classification of Functioning, Disability and HealthMaleMiddle AgedQuality of LifeReproducibility of ResultsSurveys and QuestionnairesWorld Health Organizationand Health (ICF) frameworkbrain tumorcontent coveragecontent validityDisabilitypatient-reported outcome (PRO) measureWHO International Classification of Functioning

Identifiers

PMID40293144
PMCPMC12526050

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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.