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
Linda Dirven, Maartje E Vos, Tobias Walbert, Terri S. Armstrong, David Arons, Martin J. van den Bent, Jaishri O. Blakeley, Paul D. Brown, Helen Bulbeck, Susan M. Chang, Corneel Coens, Mark R. Gilbert, Robin Grant, Rakesh Jalali, Danielle Leach, Heather Leeper, Tito R. Mendoza, Lakshmi Nayak, Kathy Oliver, Jaap C. Reijneveld, Émilie Le Rhun, Larry Rubinstein, Michael Weller, Patrick Y. Wen, Martin Taphoorn
Abstract
BACKGROUND: 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. METHODS: 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. RESULTS: A total of 215 different PRO measures were identified in 571 published and 194 unpublished studies.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). CONCLUSION: 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.