Published November 2020, this national report presents findings of the 2019 Parent and Patient Reported Experience Measure surveys (PREMs). These surveys were developed by the Picker Institute in collaboration with the NPDA to measure aspects of children and young people's and their parents and carers’ experiences of diabetes care over the previous six months.
The surveys were available online between 1 February 2019 and 31 July 2019 and all children and young people receiving care from a paediatric diabetes team, and their parents and carers, were invited to participate. Over 6000 responses were received from children and young people, and just over 7000 responses were received from parents and carers.
Whilst it is important to acknowledge the high levels of satisfaction with care evidenced in the findings, the report also aims to highlight areas for improvement in care, and makes specific recommendations to commissioners of health services, regional diabetes networks, and PDUs to address variation in patient experiences between hospitals and regions.
- With nearly 14,000 surveys returned, participating paediatric diabetes units and families with diabetes have demonstrated strong support for service improvement through user engagement.
- Most (90.0% of parents and carers and 79.9% children and young people) agreed that they always had a positive relationship with their diabetes team.
- Staff teams were commonly described as helpful, friendly and supportive in comments made by children and young people with diabetes and their parents and carers.
- Both children and young people and parents and carers identified 'advice and information' received at their clinic most frequently in their comments about what they found helpful about their clinic visits.
- Lower percentages of children and young people agreed that they always received enough information on managing exercise, illness, ketone monitoring, preparation and administration of glucagon, transition to adult services and new diabetes-related technologies.
- Most (90.4% of parents and carers and 79.6% of children and young people) would recommend their clinic to friends and family if they had diabetes.
Individual unit level reports
Individual unit level posters
You can download our PDF generator for PREM unit level posters (MS Excel file with macros) for summary and feedback posters for your unit level PREM 2019 results. These posters can be printed for display in your clinic waiting area, or can be shared with your contacts via email.
Additional data files
As part of our commitment to open data, we have made PREM quantitative data files available on our data files page.
If you have any queries please contact the NPDA team - firstname.lastname@example.org.
We hosted a live webinar exploring the 2019 PREM report. The webinar covered the background and context of the PREM, key findings from the quantitative and qualitative sections of the PREM surveys and featured a Q&A session with the NPDA Clinical Lead Professor Justin Warner and NPDA Parent Representatives Kate Cullen and Simon Lewthwaite.
We have also created a short animation with DigiBete summarising the results of the PREM surveys.