{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T23:30:14Z","timestamp":1787009414817,"version":"build-2736575974"},"reference-count":16,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2021,2,13]],"date-time":"2021-02-13T00:00:00Z","timestamp":1613174400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"DOI":"10.13039\/501100002203","name":"Brain Tumour Charity","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100002203","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,7,14]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>The Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) working group aims to provide guidance on the use of PROs in brain tumor patients. PRO measures should be of high quality, both in terms of relevance and other measurement properties. This systematic review aimed to identify PRO measures that have been used in brain tumor studies to date.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A systematic literature search for articles published up to June 25, 2020 was conducted in several electronic databases. Pre-specified inclusion criteria were used to identify studies using PRO measures assessing symptoms, (instrumental) activities of daily living [(I)ADL] or health-related quality of life (HRQoL) in adult patients with glioma, meningioma, primary central nervous system lymphoma, or brain metastasis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>A total of 215 different PRO measures were identified in 571 published and 194 unpublished studies. The identified PRO measures include brain tumor-specific, cancer-specific, and generic instruments, as well as instruments designed for other indications or multi- or single-item study-specific questionnaires. The most frequently used instruments were the EORTC QLQ-C30 and QLQ-BN20 (n = 286 and n = 247), and the FACT-Br (n = 167), however, the majority of the instruments were used only once or twice (150\/215).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Many different PRO measures assessing symptoms, (I)ADL or HRQoL have been used in brain tumor studies to date. Future research should clarify whether these instruments or their scales\/items exhibit good content validity and other measurement properties for use in brain tumor patients.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/nop\/npab013","type":"journal-article","created":{"date-parts":[[2021,2,14]],"date-time":"2021-02-14T03:04:45Z","timestamp":1613271885000},"page":"417-425","source":"Crossref","is-referenced-by-count":19,"title":["Systematic review on the use of patient-reported outcome measures in brain tumor studies: part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative"],"prefix":"10.1093","volume":"8","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9157-9895","authenticated-orcid":false,"given":"Linda","family":"Dirven","sequence":"first","affiliation":[{"name":"Department of Neurology, Leiden University Medical Center, Leiden, the Netherlands"},{"name":"Department of Neurology, Haaglanden Medical Center, The Hague, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maartje E","family":"Vos","sequence":"additional","affiliation":[{"name":"Department of Neurology, Leiden University Medical Center, Leiden, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tobias","family":"Walbert","sequence":"additional","affiliation":[{"name":"Department of Neurology and Neurosurgery, Henry Ford Health System, Detroit, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Terri S","family":"Armstrong","sequence":"additional","affiliation":[{"name":"Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institute of Health, Bethesda, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Arons","sequence":"additional","affiliation":[{"name":"National Brain Tumor Society, Newton, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin J","family":"van den Bent","sequence":"additional","affiliation":[{"name":"Department of Neurology, Erasmus Medical Center Cancer Institute, Rotterdam, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jaishri","family":"Blakeley","sequence":"additional","affiliation":[{"name":"Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul D","family":"Brown","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Mayo Clinic, Rochester, Minnesota, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen","family":"Bulbeck","sequence":"additional","affiliation":[{"name":"Brainstrust \u2013 The Brain Cancer People, Cowes, Isle of Wight, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan M","family":"Chang","sequence":"additional","affiliation":[{"name":"Division of Neuro-Oncology, University of California San Francisco, San Francisco, California, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Corneel","family":"Coens","sequence":"additional","affiliation":[{"name":"Statistical Department, European Organization for Research and Treatment of Cancer Headquarters, Brussels, Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark R","family":"Gilbert","sequence":"additional","affiliation":[{"name":"Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institute of Health, Bethesda, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robin","family":"Grant","sequence":"additional","affiliation":[{"name":"Department of Clinical Neurosciences, Royal Infirmary of Edinburgh, Edinburgh, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rakesh","family":"Jalali","sequence":"additional","affiliation":[{"name":"Neuro-Oncology Disease Management Group, Tata Memorial Centre, Mumbai, Maharashtra, India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Danielle","family":"Leach","sequence":"additional","affiliation":[{"name":"National Brain Tumor Society, Newton, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather","family":"Leeper","sequence":"additional","affiliation":[{"name":"Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institute of Health, Bethesda, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8122-5233","authenticated-orcid":false,"given":"Tito","family":"Mendoza","sequence":"additional","affiliation":[{"name":"Department of Symptom Research, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lakshmi","family":"Nayak","sequence":"additional","affiliation":[{"name":"Center for Neuro-Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathy","family":"Oliver","sequence":"additional","affiliation":[{"name":"International Brain Tumour Alliance, Tadworth, Surrey, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jaap C","family":"Reijneveld","sequence":"additional","affiliation":[{"name":"Department of Neurology and Brain Tumor Center Amsterdam, Amsterdam University Medical Centers (location VUmc), Amsterdam, the Netherlands"},{"name":"Stichting Epilepsie Instellingen Nederland (SEIN), Heemstede, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emilie","family":"Le Rhun","sequence":"additional","affiliation":[{"name":"Departments of Neurosurgery, Neurology and Brain 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