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
The 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.
Authors
- Ogechukwu A Asogwa (ORCID: https://orcid.org/0000-0001-6300-332X)
- Johan A F Koekkoek (ORCID: https://orcid.org/0000-0002-3648-9616)
- Martin J. van den Bent (ORCID: https://orcid.org/0000-0001-5710-5127)
- Kathy Oliver (ORCID: https://orcid.org/0000-0002-8317-2881)
- Jaap C. Reijneveld (ORCID: https://orcid.org/0000-0002-2257-3147)
- Michael Weller (ORCID: https://orcid.org/0000-0002-1748-174X)
- Patrick Y. Wen (ORCID: https://orcid.org/0000-0002-0774-7700)
- Rakesh Jalali (ORCID: https://orcid.org/0000-0002-0318-5536)
- Tobias Walbert (ORCID: https://orcid.org/0000-0003-0667-8106)
- Linda Dirven (ORCID: https://orcid.org/0000-0001-9157-9895)
- Heather Leeper (ORCID: https://orcid.org/0000-0003-2840-611X)
- Larry Rubinstein (ORCID: https://orcid.org/0000-0002-9720-9737)
- Tito R. Mendoza (ORCID: https://orcid.org/0000-0001-8122-5233)
- Terri S. Armstrong (ORCID: https://orcid.org/0000-0002-2414-0492)
- Corneel Coens (ORCID: https://orcid.org/0000-0001-7601-5450)
- Helen Bulbeck (ORCID: https://orcid.org/0000-0002-6775-5251)
- Danielle Leach
- Jaishri O. Blakeley (ORCID: https://orcid.org/0000-0002-1049-0993)
- Martin Taphoorn (ORCID: https://orcid.org/0000-0001-9949-4722)
- Pankaj Kumar Panda (ORCID: https://orcid.org/0000-0003-2804-8033)
- Mark R. Gilbert (ORCID: https://orcid.org/0000-0003-2556-9722)
- Paul D. Brown (ORCID: https://orcid.org/0000-0003-0022-4533)
- Lakshmi Nayak
- Émilie Le Rhun (ORCID: https://orcid.org/0000-0002-9408-3278)
- Jennie Taylor (ORCID: https://orcid.org/0000-0003-3980-5626)
- Robin Grant
- Marijke B Coomans (ORCID: https://orcid.org/0000-0002-0549-3663)
- Susan M. Chang
- David Arons
Institutions
- European Organisation for Research and Treatment of Cancer (NL)
- National Institutes of Health (US)
- Mayo Clinic (US)
- Johns Hopkins University (US)
- Henry Ford Health System (US)
- University of California, San Francisco (US)
- Wayne State University (US)
- University of Zurich (CH)
- Johns Hopkins Medicine (US)
- Leiden University Medical Center (NL)
- Brain Mapping Foundation (US)
- Brain Tumour Charity (GB)
- Edinburgh Royal Infirmary (GB)
- Patient-Centered Outcomes Research Institute (US)
- University of Chicago (US)
- Office of the Director (US)
- University Hospital of Zurich (CH)
- Center for Neuro-Oncology (US)
- Dana-Farber Cancer Institute (US)
- European Organisation for Research and Treatment of Cancer (BE)
- Mayo Clinic in Arizona (US)
- National Cancer Institute (US)
- Mayo Clinic in Florida (US)
- Center for Cancer Research (US)
- Erasmus MC Cancer Institute (NL)
- Amsterdam University Medical Centers (NL)
- Apollo Proton Cancer Centre (IN)
- Neurological Surgery (US)
- National Brain Tumor Society (US)
- Stichting Epilepsie Instellingen Nederland (NL)
- Digital Research Alliance of Canada
- Michigan State University (US)
Publication Details
- Journal
- Neuro-Oncology
- Published
- 2025-04-28
- DOI
- https://doi.org/10.1093/neuonc/noaf108
- Primary Topic
- Glioma Diagnosis and Treatment
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Pfizer
- GlaxoSmithKline
- Sontag Foundation
- American College of Radiology Imaging Network
- Wayne State University
- Henry Ford Health System
- Michigan State University
- Johns Hopkins University
- Regeneron Pharmaceuticals
- European Association of Neuro-Oncology
- Jazz Pharmaceuticals
- Novocure
- GW Pharmaceuticals
- Incyte
- ECOG-ACRIN Cancer Research Group
- Amsterdam University Medical Centers
- Seagen
- Universiteit Leiden
- ZonMw
- Leids Universitair Medisch Centrum
- Universität Zürich
- European Society for Medical Oncology
- Servier
- Medac
- Stichting Epilepsie Instellingen Nederland
- National Institutes of Health
- College of Engineering, Michigan State University
- University of California, San Francisco
- National Cancer Institute
- Daiichi Sankyo Europe