NPDA – The experiences of parents and patients

Clinical Lead for the National Paediatric Diabetes Audit (NPDA) Dr Justin Warner introduces us to the Parent and Patient Reported Experience Measures (PREM) report. This is their first report looking at over 13,000 responses from surveys completed by children and young people with diabetes, as well as their parents and carers.
Dr Justin Warner

“Hello, how are you? Come in and take a seat!” I say to my next patient, a 10-year-old boy with type 1 diabetes. In he comes, followed by his parents, taking a seat in one of the visitors’ chairs he usually occupies at his appointments. “Why don’t you sit in my chair, after all you’re the most important person in the room!”. Pointing, I indicate that I want him to sit at my chair, the consultant’s chair.

I am a Professor of Paediatric Diabetes and Endocrinology and I am the clinical lead for the National Paediatric Diabetes Audit (NPDA). I run clinics at the Noah’s Ark Childrens Hospital for Wales in Cardiff and the above scenario is something I do from time to time with the children and young people I see (pre-COVID, obviously).

And no, it’s not because I feel sorry for them sitting on the rigid plastic chairs and want to let them have a go at my slightly plusher chair (this is the NHS!). It’s because I want them to feel in control, to feel like they are taking the lead with their diabetes consultation, to sit in the chair where decisions are made and feel like the most important person in the room - because they are.

How a child or young person feels at clinic is a huge component of their overall experience, and that, along with the experiences of their parents and carers, is exactly what the latest NPDA report sought to explore.

It is a report showing the findings of over 13,000 surveys with over 6000 being completed by children and young people with diabetes

The NPDA has recently published its national Parent and Patient Reported Experience Measure (PREM) report, the first of its kind in England and Wales for children and young people and their parents living with diabetes. It is a report showing the findings of over 13,000 surveys with over 6000 being completed by children and young people with diabetes, amounting to around a quarter of the paediatric population living with diabetes in England and Wales. This gives us an invaluable insight into the experiences of our patient and parent population.

The surveys, developed in collaboration with the Picker Institute and a focus group of families with diabetes asked questions such as “What do you find helpful about your clinic visits?” and “How could your diabetes clinic visits be improved?”. Respondents were also given statements to rate their agreement such as “The clinic has an area for me/my child to wait that is appropriate for my/their age” and “Our diabetes team makes it possible for me to contact/spend time with other (parents of) young people with diabetes”.

The report shows some promising findings

The report shows some promising findings, for example 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, and that respondents often described staff at their clinics as ‘helpful’, ‘friendly’, and ‘supportive’. However, the PREM surveys also highlighted variation between paediatric centres providing diabetes care. An overall PREM score was constructed for each centre from the responses they received to the survey. The scores were built on a selection of questions with clear positive or negative response options which measured performance or experience. With the highest possible score being 1.0, these overall PREM scores ranged from 0.50 at some centres to 0.83 at the top scoring.

The results of the PREM can be used as a great tool to help drive quality improvement both locally and nationally

To reduce variation and improve service delivery, the results of the PREM can be used as a great tool to help drive quality improvement both locally and nationally. The NPDA has facilitated this by creating bespoke PREM result summary and feedback posters for each paediatric centre, which can be displayed in patient-facing areas or circulated via email. The first poster provides a summary of the centre’s key PREM results and the second gives the clinic an opportunity to respond and say how they will be using the learning from their results to improve their services.

Overall, the PREM report shows that there is much to celebrate, as in general, patients and parents rate their satisfaction as very high. Nonetheless, I would urge centres providing care to utilise the wealth of feedback from the PREM national, and unit level reports and use the PREM to help shape services for the better.

The families living with diabetes have spoken – now’s the time to listen!

Read the NPDA PREM report