Systematic review: measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury (2024)

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Author(s):

Kim S Bull 1 ,

Samantha Hornsey 2 ,

Colin R Kennedy 1 ,

Anne-Sophie E Darlington 3 ,

Martha A Grootenhuis 4 ,

Darren Hargrave 5 , 6 ,

Christina Liossi 7 , 8 ,

Jonathan P Shepherd 9 ,

David A Walker 10 ,

Christopher Morris 11

Publication date Created: December 08 2019

Publication date (Electronic): December 08 2019

Journal: Neuro-Oncology Practice

Publisher: Oxford University Press (OUP)

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      There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

      Abstract

      Background

      Survivors of childhood brain tumors or other acquired brain injury (ABI) are at risk of poor health-related quality of life (HRQoL); its valid and reliable assessment is essential to evaluate the effect of their illness on their lives. The aim of this review was to critically appraise psychometric properties of patient-reported outcome measures (PROMs) of HRQoL for these children, to be able to make informed decisions about the most suitable PROM for use in clinical practice.

      Methods

      We searched MEDLINE, EMBASE, and PsycINFO for studies evaluating measurement properties of HRQoL PROMs in children treated for brain tumors or other ABI. Methodological quality of relevant studies was evaluated using the consensus-based standards for the selection of health status measurement instruments checklist.

      Results

      Eight papers reported measurement properties of 4 questionnaires: Health Utilities Index (HUI), PedsQL Core and Brain Tumor Modules, and Child and Family Follow-up Survey (CFFS). Only the CFFS had evidence of content and structural validity. It also demonstrated good internal consistency, whereas both PedsQL modules had conflicting evidence regarding this. Conflicting evidence regarding test-retest reliability was reported for the HUI and PedsQL Core Module only. Evidence of measurement error/precision was favorable for HUI and CFFS and absent for both PedsQL modules. All 4 PROMs had some evidence of construct validity/hypothesis testing but no evidence of responsiveness to change.

      Conclusions

      Valid and reliable assessment is essential to evaluate impact of ABI on young lives. However, measurement properties of PROMs evaluating HRQoL appropriate for this population require further evaluation, specifically construct validity, internal consistency, and responsiveness to change.

      Related collections

      UCL: UN SDG 03 Good Health and Well-Being

      Most cited references50

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      The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration

      Alessandro Liberati, Douglas G. Altman, Jennifer Tetzlaff (2010)

      Systematic reviews and meta-analyses are essential to summarise evidence relating to efficacy and safety of healthcare interventions accurately and reliably. The clarity and transparency of these reports, however, are not optimal. Poor reporting of systematic reviews diminishes their value to clinicians, policy makers, and other users. Since the development of the QUOROM (quality of reporting of meta-analysis) statement—a reporting guideline published in 1999—there have been several conceptual, methodological, and practical advances regarding the conduct and reporting of systematic reviews and meta-analyses. Also, reviews of published systematic reviews have found that key information about these studies is often poorly reported. Realising these issues, an international group that included experienced authors and methodologists developed PRISMA (preferred reporting items for systematic reviews and meta-analyses) as an evolution of the original QUOROM guideline for systematic reviews and meta-analyses of evaluations of health care interventions. The PRISMA statement consists of a 27-item checklist and a four-phase flow diagram. The checklist includes items deemed essential for transparent reporting of a systematic review. In this explanation and elaboration document, we explain the meaning and rationale for each checklist item. For each item, we include an example of good reporting and, where possible, references to relevant empirical studies and methodological literature. The PRISMA statement, this document, and the associated website (www.prisma-statement.org/) should be helpful resources to improve reporting of systematic reviews and meta-analyses.

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        Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: report of the ISPOR Task Force for Translation and Cultural Adaptation.

        Diane Wild, Alyson Grove, Mona Martin (2005)

        In 1999, ISPOR formed the Quality of Life Special Interest group (QoL-SIG)--Translation and Cultural Adaptation group (TCA group) to stimulate discussion on and create guidelines and standards for the translation and cultural adaptation of patient-reported outcome (PRO) measures. After identifying a general lack of consistency in current methods and published guidelines, the TCA group saw a need to develop a holistic perspective that synthesized the full spectrum of published methods. This process resulted in the development of Translation and Cultural Adaptation of Patient Reported Outcomes Measures--Principles of Good Practice (PGP), a report on current methods, and an appraisal of their strengths and weaknesses. The TCA Group undertook a review of evidence from current practice, a review of the literature and existing guidelines, and consideration of the issues facing the pharmaceutical industry, regulators, and the broader outcomes research community. Each approach to translation and cultural adaptation was considered systematically in terms of rationale, components, key actors, and the potential benefits and risks associated with each approach and step. The results of this review were subjected to discussion and challenge within the TCA group, as well as consultation with the outcomes research community at large. Through this review, a consensus emerged on a broad approach, along with a detailed critique of the strengths and weaknesses of the differing methodologies. The results of this review are set out as "Translation and Cultural Adaptation of Patient Reported Outcomes Measures--Principles of Good Practice" and are reported in this document.

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          The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes.

          Lidwine B Mokkink, Caroline B Terwee, Donald L Patrick (2010)

          Lack of consensus on taxonomy, terminology, and definitions has led to confusion about which measurement properties are relevant and which concepts they represent. The aim was to clarify and standardize terminology and definitions of measurement properties by reaching consensus among a group of experts and to develop a taxonomy of measurement properties relevant for evaluating health instruments. An international Delphi study with four written rounds was performed. Participating experts had a background in epidemiology, statistics, psychology, and clinical medicine. The panel was asked to rate their (dis)agreement about proposals on a five-point scale. Consensus was considered to be reached when at least 67% of the panel agreed. Of 91 invited experts, 57 agreed to participate and 43 actually participated. Consensus was reached on positions of measurement properties in the taxonomy (68-84%), terminology (74-88%, except for structural validity [56%]), and definitions of measurement properties (68-88%). The panel extensively discussed the positions of internal consistency and responsiveness in the taxonomy, the terms "reliability" and "structural validity," and the definitions of internal consistency and reliability. Consensus on taxonomy, terminology, and definitions of measurement properties was reached. Hopefully, this will lead to a more uniform use of terms and definitions in the literature on measurement properties. Copyright 2010 Elsevier Inc. All rights reserved.

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            Author and article information

            Contributors
            Journal

            Title: Neuro-Oncology Practice

            Publisher: Oxford University Press (OUP)

            ISSN (Print): 2054-2577

            ISSN (Electronic): 2054-2585

            Publication date Created: June 2020

            Publication date Created: June 05 2020

            Publication date Created: December 08 2019

            Publication date Other: June 2020

            Publication date (Print): June 05 2020

            Publication date (Electronic): December 08 2019

            Volume: 7

            Issue: 3

            Pages: 277-287

            Affiliations

            [1 ]Clinical and Experimental Sciences, University of Southampton, UK

            [2 ]Primary Care, Population Sciences, and Medical Education, University of Southampton, UK

            [3 ]Health Sciences, University of Southampton, UK

            [4 ]Psychosocial Research and Healthcare Innovation, Princess Máxima Centre for Paediatric Oncology, Utrecht, NL

            [5 ]UCL Great Ormond Street Institute of Child Health, University College London, UK

            [6 ]Paediatric Oncology, Great Ormond Street Hospital for Children NHS Foundation Trust, London,UK

            [7 ]Psychology, University of Southampton, UK

            [8 ]Pain Control Service, Great Ormond Street Hospital for Children NHS Trust, UK

            [9 ]Southampton Health Technology Assessments Centre, University of Southampton, UK

            [10 ]Children’s Brain Tumour Research Centre, University of Nottingham, UK

            [11 ]The Peninsula Childhood Disability Research Unit, University of Exeter, UK

            Article

            DOI: 10.1093/nop/npz064

            SO-VID: 10c28c87-bbea-40b0-be92-ea2551a7501b

            Copyright © © 2019

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            Systematic review: measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury (2024)

            FAQs

            What is the behavioral outcome among survivors of childhood brain tumor a case control study? ›

            The survivors of childhood brain tumors showed statistically significantly worse behavioral outcomes for social problems (p = 0.006) and attention problems (p = 0.007) compared to age- and gender-matched healthy children.

            What are the behavioral changes after brain surgery? ›

            Personality changes, memory and judgement deficits, lack of impulse control, and poor concentration are all common issues.

            What are 3 factors that will determine the prognosis the outcome of a brain tumor? ›

            Survival by prognostic factors
            • Low-grade tumours have a more favourable prognosis than high-grade tumours.
            • People younger than 65 years of age have a more favourable prognosis.
            • People with a better performance status and neurological status have a more favourable prognosis.

            What are the long term psychiatric outcomes in pediatric brain tumor survivors? ›

            Of the long-term psychosocial effects experienced by pediatric brain tumor survivors, depression and anxiety are the most common, with incidences of 19% and 20%, respectively.

            Are you ever the same after brain surgery? ›

            Some people recover well after brain surgery, but this can take some time. Other people have some problems, or long term difficulties. The problems you may have depends on the area of the brain where the tumour was (or still is if you only had part of the tumour removed).

            Does removing a brain tumor affect personality? ›

            It's perhaps not surprising then, that a brain tumour or its treatment can cause changes to someone's personality or behaviour. Brain tumour behaviour and personality changes can include: irritability or aggression. confusion and forgetfulness.

            How long does it take the brain to fully heal after brain surgery? ›

            Your recovery time varies based on the type of brain surgery you need. On average, it can take a few weeks to recover from a less invasive form of brain surgery. For open brain surgery, the recovery time can range from six weeks to several months.

            Behavioral outcome among survivors of ...BMC Pediatricshttps://bmcpediatr.biomedcentral.com ›

            Advances in the treatment of childhood brain tumors have significantly improved survival rates. With improved survival rates, long-term treatment-related toxici...
            Benign tumors are generally treated with surgical excision alone, whereas malignant tumors are treated with a combination of chemotherapy and/or radiotherapy po...
            Children with tumors originating in the central nervous system (CNS) constitute approximately 17% of the pediatric oncology population, making this type of canc...

            What is the outcome in a case control study? ›

            A case-control study is designed to help determine if an exposure is associated with an outcome (i.e., disease or condition of interest). In theory, the case-control study can be described simply. First, identify the cases (a group known to have the outcome) and the controls (a group known to be free of the outcome).

            What are the Behavioural changes due to brain tumor? ›

            When a person is diagnosed with a brain tumor, changes in behavior and thinking occur in most patients at some point during their treatment. Changes in behavior may include mild memory loss, mood swings, or intense emotional outbursts.

            What changes in executive function in pediatric brain tumor survivors? ›

            The cognitive declines observed in pediatric BT survivors are likely due to a multitude of factors, including medical (i.e., cranial radiation, the tumor itself, and the effects of surgery)32 and demographic factors (i.e., younger age at diagnoses and female sex33, 34), and are thought to have a downstream effect on ...

            What effects will Tumours potentially have on the brain and the Behaviour of the individual? ›

            Symptoms of a brain tumour

            seizures (fits) persistently feeling sick (nausea), being sick (vomiting) and drowsiness. mental or behavioural changes, such as memory problems or changes in personality. progressive weakness or paralysis on one side of the body.

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