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

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.

Initial protocol for a national evaluation of an area-based intervention programme (A Better Start) on early-life outcomes: a longitudinal cohort study with comparison (control) cohort samples.

INTRODUCTION: Pregnancy and the first few years of a child's life are important windows of opportunity in which to equalise life chances. A Better Start (ABS) is an area-based intervention being delivered in five areas of socioeconomic disadvantage across England. This protocol describes an evaluation of the impact and cost-effectiveness of ABS. METHODS AND ANALYSIS: The evaluation of ABS comprises a mixed-methods design including impact, cost-effectiveness and process components. It involves a cohort study in the 5 ABS areas and 15 matched comparison sites (n=2885), beginning in pregnancy in 2017 and ending in 2024 when the child is age 7, with a separate cross-sectional baseline survey in 2016/2017. Process data will include a profiling of the structure and services being provided in the five ABS sites at baseline and yearly thereafter, and data regarding the participating families and the services that they receive. Eligible participants will include pregnant women living within the designated sites, with recruitment beginning at 16 weeks of pregnancy. Data collection will involve interviewer-administered and self-completion surveys at eight time points. Primary outcomes include nutrition, socioemotional development, speech, language and learning. Data analysis will include the use of propensity score techniques to construct matched programme and comparison groups, and a range of statistical techniques to calculate the difference in differences between the intervention and comparison groups. The economic evaluation will involve a within-cohort study economic evaluation to compare individual-level costs and outcomes, and a decision analytic cost-effectiveness model to estimate the expected incremental cost per unit change in primary outcomes for ABS in comparison to usual care. ETHICS AND DISSEMINATION: Ethical approval to conduct the study has been obtained. The learning and dissemination workstream involves working within and across the sites to generate learning via communities of practice and a range of learning and dissemination events.