Dr Kevin Moore, consultant endocrinologist at Tallaght/Naas Hospitals, spoke at the recent Diabetes Ireland paediatric study day about safely navigating the difficult period in the life of a young person with diabetes, when they transition from adolescence to young adult.

He pointed out that adolescence tended to be a minefield even in normal circumstances, without the added burden of living with diabetes. 

An obstacle course

Dr Moore pointed out that dealing with this vulnerable patient group was also an obstacle course for health professionals, and efforts were being made to deal with the many challenges involved.

He said there were huge challenges in trying to get patients through this difficult period and challenges in terms of laying foundations for long-term healthy life habits in adolescent and young adult type 1 diabetes patients.

Dr Moore said an audit his department at Tallaght Hospital carried out five years ago looked at 54 patients attending the young adult clinic. Patients at the hospital generally transition to regular adult care at around 24 years of age, he said. At the young adult clinic, the mean patient age was 21, and mean age of diagnosis was at just over 12 years, with a mean duration of diabetes of almost nine years. Dr Moore said the attendance rate at the clinic was very poor.

Difficulties in treatment

The average HbA1c for the patient population at the clinic is around 75mmol/mol, which he said was too high – these were similar to recent results from Galway. Dr Moore pointed out, however, that similar difficulties in treating diabetes in this age group have been experienced in the UK, with a study from Sheffield showing an average HbA1c of 86mmol/mol in young adults. A recent international study, he said, which included Irish data, showed that some centres managing young adults with diabetes were recording a HbA1c of 75mmol/mol in a large proportion of patients.

So why are the figures so disappointing in many cases for young adults with type 1 diabetes? Dr Moore said there were many reasons why young adults with type 1 struggle to control their condition. “In short, being a young adult is hard. But being a young adult with diabetes is really hard.”

Anxiety and depression

A recent UK study showed a high prevalence of anxiety, depression and eating disorders among these patients; the latter being a particular nightmare in the context of living with type 1 diabetes.

The recent audit at Tallaght Hospital showed 50% of young adult patients were missing at least one shot of insulin per week. When asked about non-compliance with insulin, reasons varied from simply ‘forgetting’ to not being in the right frame of mind to inject.

When patients in the study were asked how they felt about having type 1, over 50% either said they had come to terms with their condition or that it did not bother them significantly, which was surprising.

However, Dr Moore said this did not hide the fact that there was a significant proportion of patients who have a level of negativity that hinders their ability to look after their condition.

When asked what they thought about their current level of diabetes control, two thirds of patients either thought it was ‘ok’ or that they were moderately happy with their level of control. This, of course, did not mirror the view of their endocrinologists.

Repercussions of poor control

Unfortunately, there are repercussions for poor control of diabetes in young adults. Data from Sheffield and Galway showed a major proportion of patients had some degree of diabetic retinopathy, microalbuminuria and hypertension. 

Tallaght Hospital has reported a high attendance rate at ED for diabetic ketoacidosis (DKA) among young adult patients. 

Worse still, studies have also shown significant death rates among young adults with type 1. Causes of death were not only related to diabetes complications, but also due to suicide and overdose. Complications are totally preventable, Dr Moore pointed out.

He said unfortunately, there is not enough quality research data in this area to help healthcare professionals understand what needs to be done to help this very vulnerable patient group.

Whatever the solution is, the patients have to be central to it, according to Dr Moore. Right now, he said, many of these patients do not think they have a problem, while the data shows otherwise, and this highlighted the need to get patients on board with effective management programmes.

Setting up transition clinics

One solution suggested in research was to set up transition clinics, which may encourage younger patients to attend adult services. Another possible solution was appointing an overseer of young adult care, such as a diabetes nurse or educator, who would follow up young adult patients to ensure that they comply with their treatment programme. Researchers at Tallaght Hospital conducted a national audit looking at the current situation regarding transitioning from young adult to adult care. The audit results showed considerable service gaps.

The data showed that 16 was the usual age that patients were transferred from paediatric to adult services. 

Twenty per cent of units in the paediatric sector said they had a combined paediatric-adult transition clinic. The study also showed poor access to psychology services.

One-third of the adult centres surveyed said they ran a transition clinic while 40% of people said they employed dedicated professionals to oversee young adult patients. And as with the child diabetes services, there was poor access to psychology services. 

Guideline for transition services

With the help of the National Paediatric Diabetes Working Group, a new guideline has now been put together for transition care for young adult patients. Dr Moore said this should provide a template for each region to discuss the issues involved and hopefully devise a proper structure that tries to optimise the transfer of care and the standard of care for young adult patients.

Ideally, he said, every young adult with type 1 should have the opportunity to attend a transition clinic, preferably in the paediatric service setting, where they would be seen by a consultant and specialist nurse who would help the patient bridge the gap from paediatric to adult services.

“Healthcare professionals should understand the difficulties that young adults face trying to manage their condition. Communication skills and an ability to motivate patients is key when dealing with young adult type 1 patients.”

Individualised treatment

As with any diabetes patient, care should be individualised, with an emphasis on adherence to self-management where appropriate, Dr Moore said.

Ideally, all adult diabetes centres should have a health professional who is overseeing the care of young adult patients transitioning to adult services, he added. 

“It’s essential that we have systems in place to flag non-attenders and to deal with escalating HbA1cs.”

Dr Moore said there were a number of key areas around which young adult patients require education. 

“We need to ensure that we are giving our young patients all the necessary education and information about managing their condition. It’s really essential that our patients have access to psychology services when needed, and that currently isn’t the case.”

Vulnerable patients

In conclusion, Dr Moore said he believed young adults with diabetes were in many ways ‘our most important patients’. “They are a hugely vulnerable group of patients but the reality is we are just not doing well enough in managing them, in terms of HbA1c levels, non-compliance with treatment, and disengagement and drop-outs from services, which are major issues.”

However, he said the publication of new guidelines would hopefully lead to service improvements. Dr Moore said it was essential that adequate resources be allocated to young adult diabetes services.