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      Quality of Life and Participation of Children With Visual Impairment: Comparison With Population Reference Scores

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          Abstract

          Purpose

          The purpose of this study was to investigate quality of life and participation in children aged 3 to 17 years with visual impairment (VI) compared to reference groups and between subgroups with increasing severity levels of VI.

          Methods

          Parents of children aged 3 to 17 years ( n = 500) and children aged 13 to 17 years ( n = 75) completed the Child and Adolescent Scale of Participation (CASP). Children aged 7 to 17 years ( n = 263) and their parents ( n = 255) completed the KIDSCREEN-27 questionnaire to assess quality of life. Scores were compared to age and/or gender-appropriate population-based samples. For the CASP, a comparison was also made with children with chronic conditions or disabilities. The association between severity of VI and quality of life or participation was analyzed with linear regression models.

          Results

          Children reported significantly worse on Physical Wellbeing and Social Support & Peers, but better on the School Environment KIDSCREEN-27 subscales compared to reference groups. Parents additionally reported worse on Autonomy & Parent Relation. Children's participation was significantly worse compared to a population-based sample, but significantly better compared to children with chronic conditions and disabilities. Having moderate or severe VI/blindness was significantly associated with worse participation, as reported by parents relative to those with no VI.

          Conclusions

          Quality of life of children with VI is affected especially regarding Physical Wellbeing and Social Support & Peers compared to a reference population, and their participation is considerably worse. Participation was more affected in children with more severe VI. These results contribute to the understanding of the impact of VI. Interventions targeting physical health, social skills, and participation are warranted.

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          Most cited references49

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          COSMIN guideline for systematic reviews of patient-reported outcome measures

          Purpose Systematic reviews of patient-reported outcome measures (PROMs) differ from reviews of interventions and diagnostic test accuracy studies and are complex. In fact, conducting a review of one or more PROMs comprises of multiple reviews (i.e., one review for each measurement property of each PROM). In the absence of guidance specifically designed for reviews on measurement properties, our aim was to develop a guideline for conducting systematic reviews of PROMs. Methods Based on literature reviews and expert opinions, and in concordance with existing guidelines, the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) steering committee developed a guideline for systematic reviews of PROMs. Results A consecutive ten-step procedure for conducting a systematic review of PROMs is proposed. Steps 1–4 concern preparing and performing the literature search, and selecting relevant studies. Steps 5–8 concern the evaluation of the quality of the eligible studies, the measurement properties, and the interpretability and feasibility aspects. Steps 9 and 10 concern formulating recommendations and reporting the systematic review. Conclusions The COSMIN guideline for systematic reviews of PROMs includes methodology to combine the methodological quality of studies on measurement properties with the quality of the PROM itself (i.e., its measurement properties). This enables reviewers to draw transparent conclusions and making evidence-based recommendations on the quality of PROMs, and supports the evidence-based selection of PROMs for use in research and in clinical practice.
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            Magnitude, temporal trends, and projections of the global prevalence of blindness and distance and near vision impairment: a systematic review and meta-analysis.

            Global and regional prevalence estimates for blindness and vision impairment are important for the development of public health policies. We aimed to provide global estimates, trends, and projections of global blindness and vision impairment.
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              The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature.

              The purpose of this paper is to summarize the best evidence regarding the impact of providing patient-reported outcomes (PRO) information to health care professionals in daily clinical practice. Systematic review of randomized clinical trials (Medline, Cochrane Library; reference lists of previous systematic reviews; and requests to authors and experts in the field). Out of 1,861 identified references published between 1978 and 2007, 34 articles corresponding to 28 original studies proved eligible. Most trials (19) were conducted in primary care settings performed in the USA (21) and assessed adult patients (25). Information provided to professionals included generic health status (10), mental health (14), and other (6). Most studies suffered from methodologic limitations, including analysis that did not correspond with the unit of allocation. In most trials, the impact of PRO was limited. Fifteen of 23 studies (65%) measuring process of care observed at least one significant result favoring the intervention, as did eight of 17 (47%) that measured outcomes of care. Methodological concerns limit the strength of inference regarding the impact of providing PRO information to clinicians. Results suggest great heterogeneity of impact; contexts and interventions that will yield important benefits remain to be clearly defined.
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                Author and article information

                Journal
                Invest Ophthalmol Vis Sci
                Invest Ophthalmol Vis Sci
                iovs
                IOVS
                Investigative Ophthalmology & Visual Science
                The Association for Research in Vision and Ophthalmology
                0146-0404
                1552-5783
                11 June 2021
                June 2021
                : 62
                : 7
                : 14
                Affiliations
                [1 ]Department of Ophthalmology, Amsterdam UMC, Vrije Universiteit Amsterdam, the Amsterdam Public Health Research Institute, MB Amsterdam, The Netherlands
                Author notes
                Correspondence: Ellen B. M. Elsman, Amsterdam UMC, location VUmc, KTC4-027, PO Box 7057, 1007 MB Amsterdam, The Netherlands; e.elsman@ 123456amsterdamumc.nl .

                EBME and MK contributed equally to this work, the name appearance is in alphabetical order.

                Article
                IOVS-21-32288
                10.1167/iovs.62.7.14
                8196425
                34115092
                08858640-4475-4e07-a45d-334c895d8dfb
                Copyright 2021 The Authors

                This work is licensed under a Creative Commons Attribution 4.0 International License.

                History
                : 19 May 2021
                : 29 January 2021
                Page count
                Pages: 10
                Categories
                Low Vision
                Low Vision

                participation,child and adolescent scale of participation (casp),kidscreen-27 questionnaire,visual impairment (vi),children,quality of life

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