Publications by authors named "Ellen B M Elsman"

Purpose: Systematic reviews of outcome measurement instruments (OMIs) are an important tool to guide the selection of OMIs for research and clinical practice. However, presenting the large amount of complex data pertaining both to the quality of each study (i.e.

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Background: Poor vision compromises quality of life and participation in different daily life activities of children such as, sports, leisure time, interactive play and social interaction. The purpose of this cross - sectional study is to investigate participation and quality of life of children with visual impairment (VI) and blindness compared with normally sighted peers.

Methodology: Children aged 7-17 years with blindness (n = 100), moderate to severe VI (n = 100) and normal sight (n = 100) completed Nepalese versions of the Participation and activity inventory children and youth (PAI-CY 7-12 and 13-17), L.

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Background: New investigators (NI), encompassing graduate students, recent doctoral graduates, and early-career faculty, are instrumental in advancing quality of life (QoL) research through innovative methodologies and diverse perspectives. Within the International Society for Quality of Life Research (ISOQOL), the New Investigators Special Interest Group (NI-SIG) fosters collaboration and supports this community. This study utilizes bibliometric analysis to examine the contributions of NI-SIG members, focusing on publication trends, collaboration patterns, and thematic developments in QoL research.

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Purpose: We aimed to develop an Explanation & Elaboration document to provide explanations, rationales, and good examples of reporting for each item in the COSMIN Reporting Guideline 2.0.

Methods: The development of the Explanation & Elaboration document was conducted in four phases.

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Objective: The objective of this scoping review is to develop a list of items for potential inclusion in the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) reporting guidelines for network meta-analysis (NMA), scoping reviews (ScRs), and rapid reviews (RRs).

Introduction: The PRISMA extensions for NMA and ScRs were published in 2015 and 2018. However, since then, their methodologies and innovations, including automation, have evolved.

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Purpose: Systematic reviews of patient-reported outcome measures (PROMs) are important tools to select the most suitable PROM for a study or clinical application. Conducting these reviews is challenging, and the quality of these reviews needs to be improved. We updated the COSMIN guideline for systematic reviews of PROMs, including the COSMIN Risk of Bias checklist, and the COSMIN criteria for good measurement properties.

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Article Synopsis
  • - The study aimed to evaluate the effectiveness of 12 patient-reported outcome measures (PROMs) for assessing depression severity in adolescents, given the importance of accurately measuring depression in clinical settings.
  • - Researchers conducted a comprehensive review using multiple databases and followed specific guidelines to assess various measurement properties of the PROMs, ultimately narrowing down to 31 studies for appraisal.
  • - The review concluded that while some PROMs show promise in measuring depression in adolescents, none can currently be recommended for consistent use due to a lack of robust evidence and methodological issues, advising caution for clinicians and researchers.
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  • The study aimed to compare physical activity (PA) levels between children with visual impairment (VI) and those with normal sight using wearable devices for one week.
  • Results showed that children with VI engaged in lower overall activity levels, particularly vigorous PA, and were more sedentary during school hours, despite being less sedentary before school and on weekends.
  • The findings suggest a need for schools to implement more intense physical activity programs specifically designed for children with visual impairment to improve their overall activity levels.
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Purpose: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024.

Methods: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement.

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Purpose: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024.

Methods: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement.

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Purpose: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024.

Methods: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement.

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Purpose: Systematic reviews evaluating and comparing the measurement properties of outcome measurement instruments (OMIs) play an important role in OMI selection. Earlier overviews of review quality (2007, 2014) evidenced substantial concerns with regards to alignment to scientific standards. This overview aimed to investigate whether the quality of recent systematic reviews of OMIs lives up to the current scientific standards.

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Background And Objective: Although comprehensive and widespread guidelines on how to conduct systematic reviews of outcome measurement instruments (OMIs) exist, for example from the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) initiative, key information is often missing in published reports. This article describes the development of an extension of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline: PRISMA-COSMIN for OMIs 2024.

Methods: The development process followed the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) guidelines and included a literature search, expert consultations, a Delphi study, a hybrid workgroup meeting, pilot testing, and an end-of-project meeting, with integrated patient/public involvement.

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To identify priority areas to improve the design, conduct, and reporting of pediatric clinical trials, the international expert network, Standards for Research (StaR) in Child Health, was assembled and published the first 6 Standards in Pediatrics in 2012. After a recent review summarizing the 247 publications by StaR Child Health authors that highlight research practices that add value and reduce research "waste," the current review assesses the progress in key child health trial methods areas: consent and recruitment, containing risk of bias, roles of data monitoring committees, appropriate sample size calculations, outcome selection and measurement, and age groups for pediatric trials. Although meaningful change has occurred within the child health research ecosystem, measurable progress is still disappointingly slow.

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Background: In recent years, projects to develop reporting guidelines have attempted to integrate the perspectives of patients and public members. Best practices for patient and public involvement (PPI) in such projects have not yet been established. We recently developed an extension of PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), to be used for systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) for OMIs 2024.

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Purpose: Studies showing problematic sleep patterns in blind and visually impaired children are often based on (parent) self-report. The purpose was to compare sleep patterns of blind children to normally sighted peers using objective measures.

Methods: In this cross-sectional study, 100 blind (best-corrected visual acuity <3/60) and 100 age- and gender-matched normally sighted children aged 7 to 17 years wore a digital activity monitoring device for 1 week.

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Article Synopsis
  • - The study focused on developing a pediatric-friendly template called CommuniKIDS to communicate clinical trial results to children, youth, and their families, addressing their specific needs for understanding trial progress and outcomes.
  • - Patient and Public Involvement (PPI) played a significant role in the creation of the CommuniKIDS template, which included contributions from youth and parent advisors through workshops to determine the best ways to present trial information.
  • - Key improvements to the template based on feedback included new sections that summarize trial results, detail side effects, and outline next steps for participants, emphasizing the importance of effective communication in clinical trials.
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  • A new standard set for pediatric health outcomes was established, focusing on patient-reported outcome measures (PROMs) for global health, cognitive function, and self-efficacy.
  • The study evaluated the measurement properties of three specific PROMs to determine if they are suitable for routine pediatric care, using data from various scientific databases.
  • Results showed that the PROMIS instruments had sufficient validity and reliability, making them usable in clinical settings, whereas the NIH Toolbox needs more research on its content validity before it can be recommended.
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Purpose: To study the causes of moderate and severe visual impairment (VI) and blindness and its changing trends in Nepalese children.

Patients And Methods: A cross-sectional descriptive study was conducted. Participants, aged 7 to 17 years were recruited from integrated schools for the blind and the outpatient department of a tertiary eye hospital in Kathmandu.

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Purpose: To investigate the agreement between an online nurse-assisted eye-screening tool and reference tests in older adults receiving home healthcare and to collect user experiences.

Methods: Older adults (65+) receiving home healthcare were included. Home healthcare nurses assisted in administering the eye-screening tool at participants' homes.

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Psychometric properties of the v1.0 Patient-Reported Outcomes Measurement Information System (PROMIS®) sleep disturbance (27 items) and sleep-related impairment (SRI; 16 items) item banks, short forms derived from the item bank, and simulated computerised adaptive test (CAT), were assessed in a representative sample of 1,006 adults from the Dutch general population. For sleep disturbance all items fitted the item response theory model.

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