title: Measuring health-related quality of life in cervical cancer patients: a systematic review of the most used questionnaires and their validity.
abstract: Data on health-related quality of life (HRQoL) is paramount for shared and evidence based decision-making. Since an overview of cervical cancer HRQoL tools and their validity appears to be lacking, we performed a systematic review on usage of disease specific HRQoL instruments in cervical cancer patients and their psychometric properties to identify the most suitable cervical cancer specific HRQoL tool.
  
  
  
  We searched Pubmed, EMBASE and PsycINFO from inception up to 18 October 2016 for studies on quality of life in cervical cancer patients. Data extraction and HRQoL identification was performed by two independent reviewers. Validation studies of the identified cervical cancer specific HRQoL tools were retrieved and assessed on psychometric properties using the COSMIN checklist. All used cervical cancer specific HRQoL instruments were scored and ranked according to their psychometric properties.
  
  
  
  We included 156 studies (20,690 patients) and identified 31 HRQoL tools. The EORTC QLQ-CX24 (35 studies; 5,556 patients) and FACT-Cx (22 studies; 4,224 patients) were the only cervical cancer specific tools. The EORTC QLQ-CX24 had 4 out of 9 positive rated psychometric properties; internal consistency, content and construct validity, and agreement. Criterion validity, reliability, and interpretability scored doubtful. Responsiveness and floor- and ceiling effects were not reported. The FACT-Cx had 2 out of 9 positive rated psychometric properties; internal consistency and agreement. Content validity, reliability, and interpretability scored doubtful while criterion and construct validity scored negative. Responsiveness and floor- and ceiling effects were not reported.
  
  
  
  The validity of the often used EORTC QLQ-CX24 questionnaire for cervical cancer patients remains uncertain as 5 out of 9 psychometric properties were doubtful or not reported in current literature. Cervical cancer specific HRQoL tools should therefore always be used in conjunction with validated generic cancer HRQoL tools until proper validity has been proven, or a more valid tool has been developed.
authors.affiliation: Department of Operating Rooms, Radboud University Medical Centre, Radboudumc Institute for Health Sciences, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands. Casper.Tax@radboudumc.nl.
authors.forename: Casper
authors.identifier: 0000-0002-3506-3664
authors.initials: C
authors.lastname: Tax
authors.affiliation: Radboud University Faculty of Medicine, Nijmegen, The Netherlands.
authors.forename: Marlie E
authors.initials: ME
authors.lastname: Steenbergen
authors.affiliation: Department of Gynaecology, Radboud University Medical Centre, Radboudumc Institute for Health Sciences, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: Petra L M
authors.initials: PL
authors.lastname: Zusterzeel
authors.affiliation: Department of Gynaecology, Radboud University Medical Centre, Radboudumc Institute for Health Sciences, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: Ruud L M
authors.initials: RL
authors.lastname: Bekkers
authors.affiliation: Department of Operating Rooms, Radboud University Medical Centre, Radboudumc Institute for Health Sciences, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands.|Department of Health Evidence, Radboud University Medical Centre, Radboudumc Institute for Health Sciences, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: Maroeska M
authors.initials: MM
authors.lastname: Rovers
mesh_terms: D005260:Female; D006304:Health Status; D006801:Humans; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D002583:Uterine Cervical Neoplasms / Q000628:therapy*
keywords: Cervical cancer; HRQoL; Psychometric properties; Validity