Measuring health-related quality of life in cervical cancer patients: a systematic review of the most used questionnaires and their validity

Casper Tax,Marlie E. Steenbergen,Ruud L. M. Bekkers,Maroeska M. Rovers,Petra L. M. Zusterzeel

doi:10.1186/s12874-016-0289-x

Abstract

BackgroundData 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.MethodsWe 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.ResultsWe 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.ConclusionThe 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.

Highlights

Data on health-related quality of life (HRQoL) is paramount for shared and evidence based decisionmaking
The acceptance of medical treatments is critically dependent on these HRQoL consequences, making it one of the most important parameters in the evaluation of medical treatments
Psychometric properties indicate if a measurement tool is; free of error, assesses what it is intended to measure, is able to detect change in an individual over time, and the degree to which one can assign qualitative meaning to quantitative scores [6]

Summary

Introduction

Data on health-related quality of life (HRQoL) is paramount for shared and evidence based decisionmaking. Different side effects, such as: bladder, bowel, and vaginal dysfunction, lymphedema, and lymphocysts can occur [3, 4]. These side effects, together with the emotional and social impact of the disease, influence a patients’ health-related quality of life (HRQoL), even when survival is extended. Quality of life is a complex, multidimensional construct, with a range of conceptual definitions and is often evaluated using HRQoL tools. The validity and suitability of such HRQoL tools, is represented by their psychometric properties. Since the psychometric properties of a measurement tool can differ per target population, it is recommended that they are evaluated in that specific target population

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