Marijke B Coomans1, Marthe C M Peeters1, Johan A F Koekkoek1,2, Jan W Schoones3, Jaap Reijneveld4,5, Martin J B Taphoorn1,2, Linda Dirven1,2. 1. Department of Neurology, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands. 2. Department of Neurology, Haaglanden Medical Center, 2262 BA The Hague, The Netherlands. 3. Walaeus Library, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands. 4. Department of Neurology and Brain Tumour Center Amsterdam, Amsterdam University Medical Center, 1007 MB Amsterdam, The Netherlands. 5. Stichting Epilepsie Instellingen Nederland (SEIN), 2103 SW Heemstede, The Netherlands.
Abstract
BACKGROUND: Health-related quality of life (HRQoL) has become an increasingly important patient-reported outcome in glioma studies. Ideally, collected HRQoL data should be exploited to the full, with proper analytical methods. This systematic review aimed to provide an overview on how HRQoL data is currently evaluated in glioma studies, focusing on the research objectives and statistical analyses of HRQoL data. METHODS: A systematic literature search in the databases PubMed, Embase, Web of Science and Cochrane was conducted up to 5 June 2020. Articles were selected based on predetermined inclusion criteria and information on study design, HRQoL instrument, HRQoL research objective and statistical methods were extracted. RESULTS: A total of 170 articles describing 154 unique studies were eligible, in which 17 different HRQoL instruments were used. HRQoL was the primary outcome in 62% of the included articles, and 51% investigated ≥1 research question with respect to HRQoL, for which various analytical methods were used. In only 42% of the articles analyzing HRQoL results over time, the minimally clinical important difference was reported and interpreted. Eighty-six percent of articles reported HRQoL results at a group level only, and not at the individual patient level. CONCLUSION: Currently, the assessment and analysis of HRQoL outcomes in glioma studies is highly variable. Opportunities to maximize information obtained with HRQoL data include appropriate and complementary analyses at both the group and individual level, comprehensive reporting of HRQoL results in separate articles or supplementary material, and adherence to existing guidelines about the assessment, analysis and reporting of patient-reported outcomes.
BACKGROUND: Health-related quality of life (HRQoL) has become an increasingly important patient-reported outcome in glioma studies. Ideally, collected HRQoL data should be exploited to the full, with proper analytical methods. This systematic review aimed to provide an overview on how HRQoL data is currently evaluated in glioma studies, focusing on the research objectives and statistical analyses of HRQoL data. METHODS: A systematic literature search in the databases PubMed, Embase, Web of Science and Cochrane was conducted up to 5 June 2020. Articles were selected based on predetermined inclusion criteria and information on study design, HRQoL instrument, HRQoL research objective and statistical methods were extracted. RESULTS: A total of 170 articles describing 154 unique studies were eligible, in which 17 different HRQoL instruments were used. HRQoL was the primary outcome in 62% of the included articles, and 51% investigated ≥1 research question with respect to HRQoL, for which various analytical methods were used. In only 42% of the articles analyzing HRQoL results over time, the minimally clinical important difference was reported and interpreted. Eighty-six percent of articles reported HRQoL results at a group level only, and not at the individual patient level. CONCLUSION: Currently, the assessment and analysis of HRQoL outcomes in glioma studies is highly variable. Opportunities to maximize information obtained with HRQoL data include appropriate and complementary analyses at both the group and individual level, comprehensive reporting of HRQoL results in separate articles or supplementary material, and adherence to existing guidelines about the assessment, analysis and reporting of patient-reported outcomes.
Authors: Marijke Coomans; Linda Dirven; Neil K Aaronson; Brigitta G Baumert; Martin van den Bent; Andrew Bottomley; Alba A Brandes; Olivier Chinot; Corneel Coens; Thierry Gorlia; Ulrich Herrlinger; Florence Keime-Guibert; Annika Malmström; Francesca Martinelli; Roger Stupp; Andrea Talacchi; Michael Weller; Wolfgang Wick; Jaap C Reijneveld; Martin J B Taphoorn Journal: Eur J Cancer Date: 2019-06-13 Impact factor: 9.162
Authors: J Z Musoro; S C Sodergren; C Coens; A Pochesci; M Terada; M T King; M A G Sprangers; M Groenvold; K Cocks; G Velikova; H-H Flechtner; A Bottomley Journal: Colorectal Dis Date: 2020-08-28 Impact factor: 3.788
Authors: Melanie Calvert; Derek Kyte; Rebecca Mercieca-Bebber; Anita Slade; An-Wen Chan; Madeleine T King; Amanda Hunn; Andrew Bottomley; Antoine Regnault; An-Wen Chan; Carolyn Ells; Daniel O'Connor; Dennis Revicki; Donald Patrick; Doug Altman; Ethan Basch; Galina Velikova; Gary Price; Heather Draper; Jane Blazeby; Jane Scott; Joanna Coast; Josephine Norquist; Julia Brown; Kirstie Haywood; Laura Lee Johnson; Lisa Campbell; Lori Frank; Maria von Hildebrand; Michael Brundage; Michael Palmer; Paul Kluetz; Richard Stephens; Robert M Golub; Sandra Mitchell; Trish Groves Journal: JAMA Date: 2018-02-06 Impact factor: 56.272
Authors: Emil Ter Veer; Jessy Joy van Kleef; Mirjam A G Sprangers; Nadia Haj Mohammad; Martijn G H van Oijen; Hanneke W M van Laarhoven Journal: Gastric Cancer Date: 2018-01-29 Impact factor: 7.370
Authors: Augusta Silveira; Teresa Sequeira; Joaquim Gonçalves; Pedro Lopes Ferreira Journal: Health Qual Life Outcomes Date: 2022-05-21 Impact factor: 3.077