ArticleBMJ open2021
Codesigning patient experience measures for and with children and young people with intellectual disability: a study protocol.
Article in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed.
- Using cognitive interviews with children to test the content validity of a paediatric patient reported experience measure.BMJ paediatrics open · 2026Article
- Co-Producing a Patient Reported Experience Measure (PREM) With and for People With Intellectual Disability.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Co-Producing Patient-Reported Experience Measures With People With Intellectual Disability to Improve Healthcare Quality and Outcomes: The 'Listen to Me' Project Protocol.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- The comprehensibility and feasibility of the modified brief pain inventory and fear of pain questionnaire adapted for children and young people with cerebral palsy.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Validating a codesigned paediatric patient reported experience measure: a study protocol.BMJ paediatrics open · 2025Article
- Adapting Experience-Based Co-Design to Disability Research: Co-Producing the CycLink Co-Design Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- The Forgotten Voices: Enabling Children and Young People With Intellectual Disability to Express Their Views on Their Inpatient Hospital Experience.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- "I am not a number!" Opinions and preferences of people with intellectual disability about genetic healthcare.European journal of human genetics : EJHG · 2023Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionChildren and young people with intellectual disability represent one of the most vulnerable groups in healthcare, yet they remain under-represented in projects to design, develop and/or improve healthcare service delivery. Increasingly, healthcare services are using various codesign and coproduction methodologies to engage children and young people in service delivery improvements. METHODS AND ANALYSIS: This study employs an inclusive approach to the study design and execution, including two co-researchers who are young people with intellectual disability on the project team. We will follow an adapted experience-based co-design methodology to enable children and young people with intellectual disability to participate fully in the co-design of a prototype tool for eliciting patient experience data from children and young people with intellectual disability in hospital. ETHICS AND DISSEMINATION: This study was granted ethical approval on 1 February 2021 by the Sydney Children's Hospitals Network Human Research Ethics Committee, reference number 2020/ETH02898. Dissemination plan includes publications, doctoral thesis chapter, educational videos. A summary of findings will be shared with all participants and presented at the organisation quality and safety committee.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.