• Arch. Dis. Child. · Mar 2018

    Hearing the voices of children and young people to develop and test a patient-reported experience measure in a specialist paediatric setting.

    • Jo Wray, Sylvie Hobden, Sarah Knibbs, and Geralyn Oldham.
    • Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
    • Arch. Dis. Child. 2018 Mar 1; 103 (3): 272-279.

    ObjectiveTo develop and test patient-reported experience measures (PREMs) for children and young people in a specialist paediatric hospital setting.DesignSix PREMs were developed and tested by children and young people for children and young people aged 8-11, 12-13 and 14-16 years in inpatient and outpatient settings. A week-long pilot was implemented across inpatient wards and outpatient clinics to identify facilitators and barriers to the routine use of PREMs in a real-time setting across our organisation.SettingTertiary paediatric hospital.Main Outcome MeasuresFinal PREMs; identified facilitators and barriers to implementation.Participants543 children and young people aged 8-16 years attending outpatient clinics or inpatient wards across a range of specialties.ResultsThree key themes about hospital experience were identified during focus groups: facilities, treatment and tests and people working at the hospital, and these provided the structure for the questionnaires. During cognitive testing the questionnaires were generally understood but some revisions to language and length of the questionnaires were required. Two designs were selected for the final PREMs. During acceptability and feasibility testing it was evident that children and young people liked the PREMs and wanted to give feedback on their hospital experience. Particular challenges for routine use of the PREMs focused on sustainability and resources.ConclusionsThe new PREMs will provide children and young people receiving care in specialist paediatric hospitals with the opportunity to provide feedback on their experience. Sustainability and ensuring that feedback results in improvements need to be addressed in future work.© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

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