scholarly journals Research Objectives, Statistical Analyses and Interpretation of Health-Related Quality of Life Data in Glioma Research: A Systematic Review

Cancers ◽  
2020 ◽  
Vol 12 (12) ◽  
pp. 3502
Author(s):  
Marijke B. Coomans ◽  
Marthe C.M. Peeters ◽  
Johan A.F. Koekkoek ◽  
Jan W. Schoones ◽  
Jaap Reijneveld ◽  
...  

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.

Author(s):  
Diego Gómez Herrero ◽  
Rafael Sanjuan-Cerveró ◽  
Pedro Vazquez-Ferreiro ◽  
Francisco Javier Carrera-Hueso ◽  
Marina Sáez-Belló ◽  
...  

Objective: The objective of this study is to carry out a systematic review of the outcome measures reported by the patient that are used to measure the quality of life of patients with Dupuytren´s disease (DD), assessing their relevance and effectiveness. Methods: A systematic literature search was carried out in the PubMed®, Web of Sciencie®, SciELO®, EMBASE®, Google Scholar® and Cochrane® databases. We searched for peer-reviewed articles evaluating health related quality of life (HR-QoL) in patients with DD diagnosed and/or treated until April 1, 2017, for English or Spanish language. The following keywords were used: “Dupuytren´s disease (MeSH)” AND “health related quality of life (MeSH)”. The documents were eligible for inclusion if they described data on the HR-QoL domains in relation to diagnosis or treatment of DD after a revision process by two independent authors. The checklist (STROBE) was used to evaluate the quality of the works. Results: From 352 identified articles were finally selected 26 studies in the systematic review, mostly European. A total of nine outcomes measures specifically reported by the patient were identified: DASH (used in 13 of the 26 selected studies), Quick-DASH (8/26), MHQ (7/26), briefMHQ (1/26), URAM (4/26), POS-HAND/ARM (1/26), SDSS (1/26), DDSP (1/26) and CHFS (1/26) questionnaires. We analyze their quantitative results to evaluate the effectiveness and evaluate the methodological quality of the studies on the measurement properties of the results reported by patients related to health. Conclusion: More work is urgently needed in these areas before we can reach a consensus on which instrument is the best to assess functional deterioration and improvement in patients with DD.


2018 ◽  
Vol 28 (1) ◽  
pp. 11-21 ◽  
Author(s):  
Tonya M. Pan-Weisz ◽  
Maria Kryza-Lacombe ◽  
Jeffrey Burkeen ◽  
Jona Hattangadi-Gluth ◽  
Vanessa L. Malcarne ◽  
...  

2016 ◽  
pp. now107 ◽  
Author(s):  
Daniel M. Fountain ◽  
Dominic Allen ◽  
Alexis J. Joannides ◽  
Dipankar Nandi ◽  
Thomas Santarius ◽  
...  

Author(s):  
Mirjam C. M. van der Ende-van Loon ◽  
A. Stoker ◽  
P. T. Nieuwkerk ◽  
W. L. Curvers ◽  
E. J. Schoon

Abstract Purpose Barrett esophagus (BE) is associated with a significant decrease of health-related quality of life (HRQoL). Too often, patient-reported outcome measures (PROMs) are applied without considering what they measure and for which purposes they are suitable. With this systematic review, we provide researchers and physicians with an overview of all the instruments previously used for measuring HRQoL in BE patients and which PROMs are most appropriate from the patient’s perspective. Methods A comprehensive search was performed to identify all PROMs used for measuring HRQoL in BE patients, to identify factors influencing HRQoL according to BE patients, and to evaluate each PROM from a patients’ perspective. Results Among the 27 studies, a total of 32 different HRQoL instruments were identified. None of these instruments were designed or validated for use in BE patients. Four qualitative studies were identified exploring factors influencing HRQoL in the perceptions of BE patients. These factors included fear of cancer, anxiety, trust in physician, sense of control, uncertainty, worry, burden of endoscopy, knowledge and understanding, gastrointestinal symptoms, sleeping difficulties, diet and lifestyle, use of medication, and support of family and friends. Conclusion None of the quantitative studies measuring HRQoL in BE patients sufficiently reflected the perceptions of HRQoL in BE patients. Only gastrointestinal symptoms and anxiety were addressed in the majority of the studies. For the selection of PROMs, we encourage physicians and researchers measuring HRQoL to choose their PROMs from a patient perspective and not strictly based on health professionals’ definitions of what is relevant.


BMJ Open ◽  
2020 ◽  
Vol 10 (7) ◽  
pp. e038113
Author(s):  
Ibrahim Almufarrij ◽  
Kevin J Munro ◽  
Harvey Dillon

IntroductionUsing a probe-tube microphone to measure and adjust the real-ear performance of the hearing aid to match the prescription target is recommended and widely used in clinical practice. Hearing aid fitting software can approximately match the amplification characteristics of the hearing aid to the prescription without real-ear measurements (REMs), but using REM improves the match to the prescribed target. What is unclear is if the improved match results in a better patient-reported outcome. The primary objective of this review is to determine whether the use of REM improves patient-reported outcomes in adult hearing aid users.Methods and analysisThe review’s methods are in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols guidelines. MEDLINE, EMBASE, PsycINFO, CINAHL, Web of Science and CENTRAL via Cochrane Library will be searched to identify relevant studies. The review’s population of interest will include adults with any degree of sensorineural or mixed hearing loss who have been prescribed with acoustic hearing aids. The included studies should compare REM fitting to the initial fit provided by the manufacturer’s fitting software. Hearing-specific health-related quality of life is the primary outcome but secondary outcomes include self-reported listening ability, speech recognition scores, generic health-related quality of life, hours of use, number of required follow-up sessions and adverse events. Randomised and non-randomised controlled trials will be included. The risk of bias in the included studies will be evaluated using Down and Black’s checklist. The quality of the overall evidence will be assessed using the Grading of Recommendations, Assessment, Development and Evaluations tool.Ethics and disseminationEthical approval will not be sought because this systematic review will only retrieve and analyse data from published studies. Review results will be published in a peer-reviewed journal and presented at relevant scientific conferences.PROSPERO registration numberCRD42020166074.


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