A conference which takes place today (Thursday ) at NUI Galway, will examine ways of improving the health of young adults with Type 1 diabetes.
The event, entitled “Strength in Numbers - Teaming up to improve the health of young adults with Type 1 Diabetes” - which will be held at the Aula Maxima, aims to bring together service providers, policy makers, researchers and young adults with the condition to share and develop new approaches to diabetes management.
Speakers at the conference include Professor Sean Dinneen, Dr Molly Byrne, Professor John Gregory of Cardiff University, Dr David Chaney, national director for diabetes UK Northern Ireland, Will Hadfield, a dietician specialising in diabetes at Kings’ College Hospital in the UK, and Liam McMorrow, a young adult with diabetes.
While Type 1 diabetes in young adults is a condition that can be managed quite well they frequently struggle with achieving good glycarmic control and can have poor outcomes from the condition, says Dr Molly Byrne, a Health Research Board leader and senior lecturer at NUI Galway, who will chair the morning’s sessions.
This has been graphically demonstrated recently in data from the National Diabetes Audit Mortality Analysis 2007-2008 in England. This research revealed that in the age range 15 to 34 years, males had a mortality rate 4.2 times greater than the background age and sex matched population while for females the mortality rate was 9.2 times greater. There is no equivalent national mortality data for Ireland.
“We carried out an audit of the care delivered to young adults [age range 18 to 25 years] in the diabetes centre in Galway over a two year period. This revealed poor glycaemic control. Consistent with the national audit data from England we observed one death [in a young female] among our cohort. This audit also highlighted poor attendance at scheduled clinic visits and high attendance rates at the emergency department. Our findings were similar to those reported from three diabetes centres in the UK.”
She attributes the poor outcomes to a number of factors, including the fact that the disease requires intensive self-management which can be demanding for young people. This includes monitoring blood sugars, administering insulin, and regulating diet and exercise.
“This daily self-care regimen is challenging for most, but is especially difficult for young adults. As young adults transition from paediatric to adult services, they often struggle to adjust to different styles of health service delivery and the new levels of personal responsibility expected of them. Many young adults experience additional challenges in their lives [leaving home, starting work or college], and self care of their diabetes may suffer as a result. In addition, young adult lifestyles, risk taking behaviour, peer influence, and family conflict can impact negatively on diabetes self-care.”
The conference aims to develop new ways of managing diabetes in this target group. The organisers conducted a Health Research Board funded study, which is now drawing to a close, to develop an intervention to improve outcomes for young adults with Type 1 diabetes. An interesting aspect of the research is they teamed up with Jigsaw [the organisation which supports the mental health and wellbeing of people aged 15 to 25] to develop a young adult panel of 18 to 25 year-olds living with the condition. Members of this panel have an input into all aspects of the research.
“What we are trying to do is develop more effective interventions and engage young adults in their own self management. Professor Sean Dinneen [the principal investigator on this multidisciplinary research study, a consultant endocrinologist at Galway University Hospitals and the head of the school of medicine at NUI Galway] says they report low attendances [among this age group] at diabetes clinics and they struggle to get them to engage with the service.”
Professor Dinneen says some young people find managing the condition a “struggle”. “Young people with diabetes are the Facebook generation. What is important to them generally is to be the same as their peers, they feel that having diabetes makes them different, it sets them apart. We must see the world from their standpoint, for a lot of them, diabetes is not an easy condition to live with.”
He believes the way diabetes care is delivered in a traditional hospital setting does not work for some young adults and stresses the importance of looking at new systems of care delivery and viewing these in a “brave” and “imaginative way”.
“We are only beginning to shape this new system of care. It’s getting us to think about what is diabetes care. There are two aspects; what we do medically is done very well in hospital. In relation to support, ie, helping them live well with a chronic disease, this is not always done well in a hospital setting. That aspect is what we are looking at.”
Liam McMorrow (26 ), who is a collaborator on the HRB study and a member of its steering group, says he got Type 1 diabetes when he was aged 12.
“I burned my foot and it wasn’t healing properly. I had a dry mouth and was going to the toilet a lot as well,” says the PhD student at the University of Aberdeen who was born in London but moved to Mayo when he was 13. He studied for his undergraduate and masters degrees at NUI Galway.
He says he ignored the condition largely until a few years ago. “To an extent I was doing enough to manage it. But I was not keeping full control of it. Basically, you take a mix of short and long acting insulin twice a day by injection. The problem with that is you have to know exactly what you’re eating. I wasn’t very good, if I wanted sweets I ate them and then my sugar levels would not be great. I was very lucky I was never hospitalised.
In 2010 he did an educational course on managing Type 1 diabetes called DAFNE (Dose Adjustment for Normal Eating ). It provides patients with the skills to administer the right amount of insulin for the amount of carbohydrates they choose to eat.
“The programme was run by the diabetic clinic in Galway and Professor Dinneen is responsible for bringing it here. It taught me stuff about diabetes that I didn’t realise even though I had been living with the condition for 10 years. To be honest, I was probably arrogant. I thought what more was there to know? I discovered there was a lot more. I did my master’s thesis on Type 1 diabetes in Ireland.”