Background: First Year of Care PREM
The 2024 Parent and Patient Reported Experience Measure surveys (PREMs) assessed various aspects of children and young people's, and their parents’ and carers’, experiences of diabetes care within the first year of care.
The online surveys were available from 24 July 2023 to 23 January 2024. Children and young people receiving care from a paediatric diabetes team, and their parents and carers, with a diabetes duration of 6 to 18 months were invited to participate. This round received a total of 2,712 responses, with 726 responses from children and young people and 1,986 responses from parents and carers.
We published the findings in a report in November 2024. While it is important to acknowledge the high levels of satisfaction with care reflected in the findings, this report also highlights areas for improvement in care following diagnosis, offering specific recommendations to commissioners, regional diabetes networks, and paediatric diabetes units (PDUs) to address variations in patient and parent experiences.
Download the First Year of Care PREM report, extended analysis report and appendices below
Key messages: First Year of Care PREM
- 15% of respondents were unsure if they or their child had DKA at diagnosis, while 44% reported DKA at diagnosis—significantly higher than the 23.3% reported in the NPDA 2022/23 Care and Outcomes Report (see past NPDA reports).
- Parents/carers and children and young people were happy with the age appropriateness of the clinic waiting area.
- 82% of parents and carers could always reach their diabetes team during core hours, and 71% have 24/7 access. Nearly all respondents received face-to-face support, with 85% of parents/carers and 60% of young people receiving phone support. Over half of parents/carers also received support via hospital, home, or school visits.
- Most parents and carers could see a diabetes doctor and specialist nurse at every visit, but access was lower for dietitians and psychologists. Access to a psychologist varied widely across regions.
- Nearly a quarter of respondents weren’t offered an insulin pump or hybrid closed loop but would like to use one. Additionally, 2.7% were not offered any glucose monitoring device, and 6.6% were not using one.
- The vast majority of parents and carers and children and young people felt that schools and colleges were kept well informed with information about diabetes.
- Almost all respondents (99%) reported positive relationships with their paediatric diabetes team.
- Diabetes care impacts parents’ employment, with 30% reducing hours and 11% leaving work. Only 29% were asked by the diabetes team about financial challenges affecting their child’s care.
- 64% of parents/carers reported weekly sleep disruptions due to stress about their child’s health, with those of younger children affected more frequently.
Additional reports and data files
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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 on npda@rcpch.ac.uk.
Diabetes at School PREM 2026
Our next PREM aims to capture the experiences of children and young people with diabetes in education settings, including nursery, school and home learning. It is open from 2 March to 1 September 2026.