Better child and adolescent diabetes care

The best way of promoting effective diabetes care for children and adolescents in Ireland was the theme of a Paediatric Study Day held in Dublin in summer 2012 and organised by Diabetes Ireland.

The conference focused on the growing incidence of diabetes, in particular the challenges involved in providing effective care for this group of people with diabetes, and the challenges faced by them and their families in living with diabetes.

Prof Alf Nicholson, clinical lead of the National Paediatrics Programme, gave an update on paediatric diabetes services in Ireland. He said the new children’s hospital would immediately be swamped if it was not co-located with an adult hospital and if the model of care wasn’t in evidence.

An essential theme for diabetes care, borrowing a term from Japanese car manufacturing, was to ‘reduce variation’.

Prof Nicholson said we know we can do better because there are far too many variations in the quality of care, and diabetes needed a big lift in this country in terms of a national strategy.

He said what needed to be avoided was having a cohort of patients in one area of the country with a considerably higher HbA1c than in another. While the outcome for paediatric cancers in Ireland was uniform around the country, the same could not be said about paediatric diabetes care.

A key factor here was that many paediatric departments and services were significantly under-resourced.

“If we give them adequate resources and have a model of care and empower those units to deliver that care we will have a far better system,” Prof Nicholson said.

The programme had decided to concentrate on a number of areas, given the current financial restraints. The programme had succeeded in getting a new insulin pump therapy programme for under five-year-olds with type 1 diabetes.

Dr Stephen O’Riordan, clinical lead of the National Initiative for Paediatric Insulin Pump therapy for under-fives, outlined  the progress of this initiative. He said at present in Ireland there are in the region of 3,000 type 1 patients under the age of 15, but there are only 180 to 200 children under five in this category.

We know type 1 diabetes is at epidemic proportions around the EU. 

“In the past, 58% of our children have had no access to diabetes multidisciplinary teams and may have had to travel distances to specialist centres.

“At present it is estimated that in Ireland there are around 8.4% nationally on insulin pumps, whereas it is 15% in other European countries and 35-40% in the US.”

The aim is to ensure that every child and adolescent with diabetes in the country has access to care of a high quality.

“We now have national models of care coming through, not only in paediatric diabetes but in neonatology and other general paediatrics,” Dr O’Riordan said.

A business plan specifically for under-fives management was submitted that was cost-neutral and this was included in the HSE Service plan for 2012.

Dr O’Riordan outlined the advantages of insulin pump therapy both for the health service, in terms of cost savings, admissions for hypos and DKAs etc, and the family in terms of both cost and convenience and in quality of life for the child.

“We have been trying to get this idea across to the HSE that we are really here for the long-term in terms of preventing diabetes complications when children become adults.”

Five centres for insulin pump therapy had been nominated with appropriately trained staff organised in multidisciplinary teams: Tallaght, Crumlin and Temple Street, CUH and Galway/Limerick.

Rising incidence of type 1

A detailed picture of the rising incidence of type 1 diabetes in Europe was given to the meeting by Chris Patterson of the Centre for Public Health at Queen’s University Belfast.

According to the IDF Diabetes Atlas, ‘hotspots’ for type 1 diabetes around the world were Europe, North America, Australia and New Zealand, with low rates in Asia and South America.

An analysis of incidence of type 1 diabetes by age-group in EURODIAB centres between 1998 and 2003 showed a 6.1% annual increase among 0-4-year-olds, with an overall increase of 3.9% among 0-14-year-olds.

Further analysis showed the highest incidence was in Scandinavia followed by the UK. Prof Patterson said between 2005 and 2020 we would expect to see a doubling of cases of under-five diagnoses of type 1 diabetes. 

It is predicted that there will be a 70% increase in the number of cases in this period and a doubling among under fives.

However, the rates of increase do not appear to be uniform – periods of more rapid increase may alternate with periods of less rapid increase.

Dr Patterson described his work with Dr Chris Cardwell at Queens on perinatal risk factors that could be linked to this increase in type 1 in young people.

Factors looked at were rising birthweight, an increase in maternal age, a rise in Caesarean section rates and family size.

While evidence was found of increased diabetes risk in children under all these headings, the associations to date were weak and could be explainable by unrecognised confounding factors, Dr Patterson said.

Clinical and economic burden

Prof Stephen Greene of the University of Dundee, who is president-elect of the International Society for Paediatric and Adolescent Diabetes (ISPAD), spoke about the clinical and economic burden of type 1 diabetes in children and adolescents.

He pointed out that the incidence of diabetes is exploding around the world and type 1 is exploding underneath it. 

Data from Dundee showed that over the past 10 years, there has been a rise in the amount of insulin being used and for adults, adolescents and children the costs of the insulin has risen significantly.

There has also been a drift upwards in the cost of blood glucose strips, especially in the children’s service. Hospitalisations proved to be a big cost, with the greatest costs to the service from treating adolescents.

Prof Greene said discrepancy in average HbA1c control in various centres across Europe persists.

“So we have got our views on it, we have got the patients’ views on it and we have society background that this burden is taking place in.

“A good way of tuning into how children feel about their diabetes and what they want is through YouTube by typing in ‘diabetes’, eg. children talking about their injections, how they feel about having diabetes etc. There are problems with some teenagers not taking their insulin.”

As regards pointing children with diabetes on to a better road, Prof Greene said firstly, structured education was required.

“While there is a wide variety of structured education options, exactly how powerful these will be in the long run is uncertain.”

Emerging diabetes technology, according to Prof Greene, is ‘where it’s at’ at the moment with new developments in pumps, monitoring sensors, etc. Blood glucose meters (BGM) are beginning to connect in real time to the ‘cloud’. 

“I would predict that every BGM in the next three years almost certainly will have that facility.

“Technology is coming at us in a big way. This whole area of linking into computerised contact with patients, virtual clinics, etc is very exciting.”

Prof Greene said communication is what it is all about in terms of self-management, which goes on and on, and there is a challenge to encourage and motivate people. 

He said new and emerging technologies, as we get to know them and refine how we use them, will change the way people live with diabetes. 

Finally, moving away from the problems of developed world diabetes, to even greater challenges, Prof Greene reminded us that children in the third world have no real burden of diabetes because they die from it because they do not have insulin.

Neonatal and toddler diabetes

Dr Declan Cody, consultant paediatric endocrinologist at Our Lady’s Hospital, Crumlin, gave an update to the meeting on neonatal and toddler diabetes.

He said reasons for the increasing incidence of type 1 diabetes may include increasing exposure to environmental triggers which may alter immune function.

Dr Cody estimated that there were 1,000 pre-school children with type 1 in the UK and Ireland, with an estimated 200 in Ireland.

At diagnosis, toddlers have a more rapid and severe onset of the condition, are more acidotic and dehydrated, have a higher frequency of DKA and cerebral oedema and have a shorter duration of symptoms. There is also a more rapid progression of pancreatic beta cell loss with toddlers.

Practical issues include atypical symptoms at diagnosis, practical difficulties with administering insulin and food refusal.

Dr Cody also pointed to major practical issues with diabetes and infancy, not least of which is that infants are totally dependant on their parents and that constant vigilance is needed, with hypos difficult to differentiate from behavioural changes. There are also obviously significant emotional issues involved for the parents.

He also dealt with the issue or conventional versus intensive treatment for toddlers.

Overall, Dr Cody concluded the there is a rising incidence of type 1, especially in toddlers, and there are challenging management issues unique to infants and toddlers. The support of a multidisciplinary team was crucial.

Dr Cody said all children under six months at diagnosis should have a molecular gene test.

The surgical option

Among the presentations too was a discussion on the emerging role of bariatric surgery, by Prof Donal O’Shea. He outlined the growing rates of childhood obesity in Ireland, and explained what is involved in the different types of anti-obesity surgery.

Prof Shea said that while bariatric surgery has been shown to be successful for weight and metabolic status in adults, at least in the short-term, there is to date very limited evidence on its efficacy in children. He said less invasive options for this type of surgery were emerging.

Transition to adult services

Dr Kevin Moore, consultant endocrinologist at Tallaght and Naas Hospitals, dealt with the transition from paediatric to adult diabetes services.

He stressed that transition can be a difficult process for teenagers and young adults. Many adults cannot deal with diabetes, so why should we expect a young person to cope any better?

There were particular challenges in the transition process and those who might struggle would include those who change over to a new diabetes care team, people in areas with an undersupply of doctors, and those who have had poor attendance at paediatric services.

Dr Moore added that specific transition care programmes and clinics can help the transition process.