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Hearing the voices of children and young people to develop and test a patient-reported experience measure in a specialist paediatric setting
  1. Jo Wray1,
  2. Sylvie Hobden2,
  3. Sarah Knibbs2,
  4. Geralyn Oldham1
  1. 1Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  2. 2Social Research Institute, Ipsos MORI, London, UK
  1. Correspondence to Dr Jo Wray, Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, London, WC1N 3JH, UK; jo.wray{at}gosh.nhs.uk

Abstract

Objective To develop and test patient-reported experience measures (PREMs) for children and young people in a specialist paediatric hospital setting.

Design Six 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.

Setting Tertiary paediatric hospital.

Main outcome measures Final PREMs; identified facilitators and barriers to implementation.

Participants 543 children and young people aged 8–16 years attending outpatient clinics or inpatient wards across a range of specialties.

Results Three 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.

Conclusions The 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.

  • patient
  • experience
  • PREMs
  • specialist paediatric hospital

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Footnotes

  • Contributors JW and GO conceptualised the project. SH and SK designed the project and were responsible for oversight of all activities undertaken by Ipsos MORI. JW and GO were responsible for the day-to-day management of the study at Great Ormond Street Hospital and for the organisation and facilitation of the pilot study. JW and GO wrote the manuscript, SH and SK edited the manuscript and all authors approved the final manuscript.

  • Funding The project was funded by Great Ormond Street Hospital Children’s Charity (GOSHCC). Ipsos MORI was contracted to conduct the focus groups, develop the questionnaire and undertake the cognitive testing. There is no ongoing financial relationship between the Great Ormond Street research team and Ipsos MORI since project completion.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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