In a recent update to our indicators we added new data from the National Paediatric Diabetes Audit. It showed that uptake of many of the NICE-recommended care processes was low among young people. Simon O’Neill of Diabetes UK writes about what diabetes audit data can tell us about diabetes care for young people, the challenges faced in treating the disorder and what needs to change to improve quality.
The National Paediatric Diabetes Audit was established to compare the care and outcomes of all children and young people with diabetes receiving care from Paediatric Diabetes Units (PDUs) in England and Wales. Now in its 13th year, data is gathered from all 173 PDUs and captures information on 28,439 children and young people up to the age of 24 who are under the care of a paediatric consultant.
While we have seen some year on year improvements, the overall outcomes show that we are still not achieving the level of care that we should. Why is this important? Research has demonstrated that improving blood glucose control in people with Type 1 diabetes, particularly in the first years after diagnosis, leads to a dramatic reduction in the likelihood of the long term, serious complications associated with the condition, including blindness, kidney failure and heart disease.
One worrying statistic from the audit, therefore, is how few young people are receiving some of the processes recommended by the National Insitute for Health and Care Excellence (NICE) for managing and monitoring their diabetes control. This is improving, but with only 35.5% having all key processes recorded there is still some way to go. These should be a routine part of any diabetes appointment. Some processes are regularly measured, such as HbA1c (a measure of longer term blood glucose control) which is reported in 99.3% of young people. Others, such as eye screening, are only achieved by 66.2%. This may come down to education, as eye screening is not run within the paediatric clinics but as part of the national retinal screening programmes. We know that many adults confuse this with their routine visual check at the high street opticians so explaining the importance of this separate retinal screen is key.
NICE now recommends that children and young people with Type 1 diabetes should achieve an HbA1c of less than 48 mmol/mol. However, data from the audit shows that the median HbA1c achieved is 64.5mmol/mol and only 6.5% of children and young people are meeting the NICE target. 17.9% have a level over 80mmol/mol, putting them at the highest risk of complications. PDUs particularly need to target those with the highest HbA1c as any improvement will reduce the risk of complications. A reduction of 11mmol/mol halves the risk of complications.
So why are these standards proving so difficult to achieve and is there anything else we could be doing to improve diabetes care?
Challenges in condition management
Diabetes is difficult to manage at any age but particularly so in young people. Having to take multiple daily insulin injections, test blood glucose levels several times a day and adjust treatment in relation to food eaten and exercise taken is a difficult juggling act. For young people there are additional factors that complicate things. The surge of hormones during puberty can make children very resistant to the insulin they take, requiring increases of 30-50%. Peer pressure can also make young people reluctant to follow treatment regimens, if it means that they are going to stand out from the crowd. For most young people, there is little real ability to see into the long term future, so the risk of potential complications is generally not a motivating factor, particularly when they feel healthy most of the time.
Helping young people and their families understand more about their diabetes is important, so education is a key component of diabetes care. Yet, according to the audit, 29% of families have not accessed it. There are now good resources for education in these age groups, so there is no excuse not to provide it – but I expect it is more an issue of encouraging families to attend.
Slow change in treatment regimes
A traditional problem with improving outcomes in young people was the treatment regimen. Historically children were often managed on two injections of insulin a day, which meant that they didn’t have to inject for lunch at school. Although there were practical advantages to this, it also led to worse control, so it is good to see that the latest figures show that 82% of children are now on multiple daily injections or an insulin pump, which gives continuous small amounts of insulin. Uptake of insulin pump therapy has been very slow in the UK but it is improving, with 28% now using pumps. This still falls behind other countries where pump use is nearer 50% and utilising this technology may help further improve outcomes. Likewise, use of continuous or flash glucose monitoring, has been shown to improve control by providing much more information about blood glucose levels, allowing people to make changes to their day to day diabetes management. Reports from some parts of Sweden suggest this technology is now used in 85% of children but the figure for the UK is much lower. New NICE guidance on continuous glucose monitoring is slowly helping this figure to rise.
Sadly the audit highlights that there has been no improvement in the number of young people ending up in hospital with Diabetic Ketoacidosis (DKA), which can be fatal. DKA can normally be prevented but education on how to manage diabetes during periods of sickness (a common event that can lead to DKA) needs to improve. The audit calls on commissioners to ensure that there is appropriate 24 hour support from diabetes specialists available to families to help them reduce the chances of ending up in hospital.
Further improvements are also needed at the point of diagnosis of Type 1 diabetes. One in four children are being diagnosed when they have already developed DKA. Awareness campaigns, such as the 4 Ts from Diabetes UK, need to be widely promoted so that parents and healthcare professionals are aware of the signs and symptoms to look out for. This is particularly true for younger children, where about 1 in 3 are diagnosed in DKA.
The audit also highlights the variability in outcomes and access to care based on levels of deprivation. A third fewer children from the most deprived areas have access to insulin pumps. They also have worse overall control and are more likely to be developing complications early.
With the paediatric diabetic population growing by about 5% annually, it is also important to ensure the provision of suitably qualified health care professionals to manage that growing case load. The introduction of the Best Practice Tariff for paediatric diabetes services in England in 2012 has seen an improvement in staffing levels in many areas but there are still shortfalls in most disciplines.
Data key to improvement
The National Paediatric Diabetes Audit provides us with a wealth of data on the state of children’s diabetes care in England and Wales. We need to ensure that we really use that data to drive further improvements in diabetes care. We have seen a yearly improvement in some areas over the last six years but there is still an awful lot to do. Hopefully these youngsters will be living with diabetes for many years to come but, in order to ensure that they live healthy, long lives, we need to offer them the best quality care from the outset.
This means that PDUs will need to look at their own data to identify where improvements need to be made. We need to share best practice initiatives so that centres can continue to learn from each other, through the paediatric diabetes network. We need commissioners to ensure that appropriate resources are made available to drive that improvement. We should certainly celebrate the successes we have seen, but not rest on our laurels and think the job is done. I am sure the very dedicated paediatric diabetes healthcare professionals that provide these services will make those improvements happen.