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      Epilepsy‐specific patient‐reported outcome measures of children's health‐related quality of life: A systematic review of measurement properties

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          Abstract

          Objective

          To identify and appraise published evidence of the measurement properties for epilepsy‐specific patient‐reported outcome measures (PROMs) of children's health‐related quality of life (HRQoL).

          Methods

          We searched multiple databases for studies evaluating the measurement properties of English‐language epilepsy‐specific PROMs of children's HRQoL. We assessed the methodological quality using the COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) guidance. We extracted data about the content validity, construct validity, internal consistency, test‐retest reliability, proxy reliability, responsiveness, and precision, and assessed the measurement properties with reference to standardized criteria.

          Results

          We identified 27 papers that evaluated 11 PROMs. Methodological quality was variable. Construct validity, test‐retest reliability, and internal consistency were more commonly assessed. Quality of Life in Childhood Epilepsy (QoLCE) questionnaires are parent‐reported and evaluated more than other PROMs; QoLCE‐55 has good and replicated evidence for structural and construct validity and internal consistency. Health‐Related Quality of Life Measure for Children with Epilepsy (CHEQoL) has both child and parent‐reported versions and good evidence of content, structural, and construct validity.

          Significance

          This review identified two leading candidate epilepsy‐specific PROMs for measuring health‐related quality of life in children. Establishing evidence of the responsiveness of PROMs is a priority to help the interpretation of meaningful change scores.

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          The epidemiology of epilepsy in Europe - a systematic review.

          A Oun, E. Beghi, M Sillanpää … (2005)
          Population-based epidemiological studies on epilepsy are available mainly from the UK and the Nordic, Baltic and western Mediterranean countries. No studies were identified from large areas of Europe, especially from the former eastern Europe (except the Baltic countries) and the eastern Mediterranean countries. Based on the prevalence of epilepsy in different studies and accounting for incomplete case identification the estimated number of children and adolescents in Europe with active epilepsy is 0.9 million (prevalence 4.5-5.0 per 1000), 1.9 million in ages 20-64 years (prevalence six per 1000) and 0.6 million in ages 65 years and older (prevalence seven per 1000). Approximately 20-30% of the epilepsy population have more than one seizure per month. Based on the age-specific incidence rates in European studies, the estimated number of new cases per year amongst European children and adolescents is 130,000 (incidence rate 70 per 100,000), 96,000 in adults 20-64 years (incidence rate 30 per 100,000) and 85,000 in the elderly 65 years and older (incidence 100 per 100,000). The proportion of both new and established cases with epilepsy in the young, adults and elderly in individual countries may differ substantially from total European distribution because of differences in age structure.
          Article 0 comments Cited 144 times – based on 0 reviews     Review now
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            The proxy problem: child report versus parent report in health-related quality of life research.

            N C Theunissen, T. G. C. Vogels, H. Koopman … (1998)
            This study evaluates the agreement between child and parent reports on children's health-related quality of life (HRQoL) in a representative sample of 1,105 Dutch children (age 8-11 years old). Both children and their parents completed a 56 item questionnaire (TACQOL). The questionnaire contains seven eight-item scales: physical complaints, motor functioning, autonomy, cognitive functioning, social functioning, positive emotions and negative emotions. The Pearson correlations between the child and parent reports were between 0.44 and 0.61 (p < 0.001). The intraclass correlations were between 0.39 and 0.62. On average, the children reported a significantly lower HRQoL than their parents on the physical complaints, motor functioning, autonomy, cognitive functioning and positive emotions scales (paired t-test: p < 0.05). Agreement on all of the scales was related to the magnitude of the HRQoL scores and to some background variables (gender, age, temporary illness and visiting a physician). According to multitrait-multimethod analyses, both the child and parent reports proved to be valid.
            Article 0 comments Cited 129 times – based on 0 reviews     Review now
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              The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease.

              Kommer C.A. Sneeuw, Mirjam A.G. Sprangers, Neil K. Aaronson (2002)
              Health-related quality of life (HRQL) studies sometimes rely, in part, on proxy information obtained from patients' significant others (spouse or close companion) or health care providers. This review: (1) provides a quantitative analysis of the results that have been reported in recent studies assessing the level of agreement between patient and proxy HRQL ratings, and (2) addresses a number of key methodological issues surrounding the use of proxy raters in HRQL research. This review concentrates on 23 studies, published between 1991-2000, that describe patient-proxy agreement for a number of well-known multidimensional HRQL instruments. In general, moderate to high levels of patient-proxy agreement were reported. Lower levels of agreement were found predominantly in studies employing a small sample size (approximately 50 patient-proxy pairs or less). In larger studies comparing patients and their significant others, median correlations were between 0.60-0.70 for physical HRQL domains and about 0.50 for psychosocial domains. Mixed results were reported in studies comparing patients and their health care providers, but most of these studies employed a relatively small sample size. Proxy raters tended to report more HRQL problems than patients themselves, but the magnitude of observed differences was modest (median standardized differences of about 0.20). Based on the current evidence, we conclude that judgements made by significant others and health care providers about several aspects of patients' HRQL are reasonably accurate. Substantial discrepancies between patient and proxy ratings occur in a minority of cases. We recommend that future studies focus on: (a) the reliability and validity of proxy ratings according to common psychometric methods, and (b) the balance between information bias due to proxy ratings and potential selection bias due to exclusion of important patient subgroups from HRQL studies.
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                Author and article information

                Contributors
                Christopher Morris:
                ORCID: https://orcid.org/0000-0002-9916-507X
                christopher.morris@exeter.ac.uk
                Journal
                Journal ID (nlm-ta): Epilepsia
                Journal ID (iso-abbrev): Epilepsia
                Journal ID (doi): 10.1111/(ISSN)1528-1167
                Journal ID (publisher-id): EPI
                Title: Epilepsia
                Publisher: John Wiley and Sons Inc. (Hoboken )
                ISSN (Print): 0013-9580
                ISSN (Electronic): 1528-1167
                Publication date (Electronic): 17 January 2020
                Publication date (Print): February 2020
                Volume: 61
                Issue: 2 ( doiID: 10.1111/epi.v61.2 )
                Pages: 230-248
                Affiliations
                [ 1 ] Basic and Clinical Neuroscience Department Institute of Psychiatry, Psychology and Neuroscience King's College London London UK
                [ 2 ] University of Exeter Medical School University of Exeter Exeter UK
                [ 3 ] Evelina London Children's Hospital London UK
                [ 4 ] KCL Institute for Women and Children's Health London UK
                [ 5 ] MRC Centre for Neurodevelopmental Disorders King's College London London UK
                [ 6 ] King's College Hospital London UK
                Author notes
                [*] [* ] Correspondence

                Christopher Morris, University of Exeter Medical School, University of Exeter, South Cloisters, St Luke's Campus, Exeter, EX1 2LU, UK.

                Email: christopher.morris@ 123456exeter.ac.uk

                Author information
                https://orcid.org/0000-0003-1048-4953
                https://orcid.org/0000-0002-6039-238X
                https://orcid.org/0000-0003-2655-0564
                https://orcid.org/0000-0002-9916-507X
                Article
                Publisher ID: EPI16430
                DOI: 10.1111/epi.16430
                PMC ID: 7065094
                PubMed ID: 31953859
                SO-VID: db7ae02f-6c21-44aa-8fce-c6e3caaf83f1
                Copyright © © 2020 The Authors. Epilepsia published by Wiley Periodicals, Inc. on behalf of International League Against Epilepsy
                License:

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                Date received : 07 October 2019
                Date revision received : 23 December 2019
                Date accepted : 26 December 2019
                Page count
                Figures: 1, Tables: 4, Pages: 19, Words: 10377
                Funding
                Funded by: European Union Programme of the Seventh Framework
                Award ID: 602531
                Funded by: Canadian Institutes of Health Research , open-funder-registry 10.13039/501100000024;
                Award ID: 201503MOP‐342469
                Funded by: NIHR Specialist Biomedical Research Centre for Mental Health of South London and Maudsley NHS Foundation Trust
                Funded by: Programme Grants for Applied Research , open-funder-registry 10.13039/501100007602;
                Award ID: RP‐PG‐0615‐20007
                Funded by: Charles Sykes Epilepsy Research Trust
                Funded by: Waterloo Foundation , open-funder-registry 10.13039/100012107;
                Award ID: 164‐3020
                Funded by: Charles Sykes Epilepsy Research Trust (DKP)
                Funded by: NIHR Specialist Biomedical Research Centre for Mental Health of South London and Maudsley NHS Foundation Trust
                Categories
                Subject: Full‐length Original Research
                Subject: Full‐length Original Research
                Custom metadata
                source-schema-version-number 2.0
                cover-date February 2020
                details-of-publishers-convertor Converter:WILEY_ML3GV2_TO_JATSPMC version:5.7.7 mode:remove_FC converted:11.03.2020

                ScienceOpen disciplines: Neurology
                Keywords: children,epilepsy,paediatric,patient‐reported outcome measures,young people
                Data availability:
                ScienceOpen disciplines: Neurology
                Keywords: children, epilepsy, paediatric, patient‐reported outcome measures, young people

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