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Diabetes is on the increase among young people. Jessica Datta reports on a study of how the condition affects the lives of teenagers.

Diabetes is the third most common chronic condition in children after asthma and cerebral palsy¹ with at least 20,000 children and young people in the UK suffering with it.

The large majority of children and young people with diabetes have type 1, which nearly always occurs in childhood, adolescence or young adulthood. Incidence of type 1 is increasing but epidemiological studies have not been able to explain exactly why. A small but growing number of adolescents have developed type 2 diabetes which is usually associated with people over 40 and with obesity and a sedentary lifestyle.

Concern has been expressed about the ability of young people with diabetes to maintain both good health and quality of life, and about their psychological functioning. Research has shown that diabetic emergencies are more common in adolescence, and it is in adolescence too that medical complications associated with diabetes may emerge.

But despite this negative picture, recent research by the National Children’s Bureau, supported by the Community Fund, suggests that having diabetes is not a big problem for most teenagers. More than 70 per cent of the 158 young people aged between 10 and 24 who participated in the study reported that their quality of life was "brilliant" or "good" and only 5 per cent thought that their lives were "not OK" or "bad". More than a third felt that having diabetes made no difference to the quality of their lives. A fifth thought having diabetes made life "a fair bit worse" or "a lot worse" while four people thought having diabetes actually made their lives better. The research explored health services and, in particular, arrangements for transfer from paediatric to adult care for young people with diabetes. Young people and health care staff in six areas of the UK were interviewed for the study. Young people talked about living with diabetes at home, at school and at college and how they felt about their health care.

Like most young people, participants were more interested in their social networks and activities, school, college or work, and family life than they were with concerns about their health. For those who had had diabetes since they were small children, living with the condition was what they were used to but, for some of those who were diagnosed in adolescence, it was more difficult to adjust routines to accommodate balancing food intake with injecting insulin.

In order to replace the insulin that the pancreas stops producing when diabetes develops, these young people have to inject themselves with insulin two or four times a day. The main aim of diabetes management is to maintain blood glucose levels that are as near as possible those of someone without diabetes. This is done by balancing insulin dose with food intake and exercise and can be far from simple, particularly during adolescence when puberty and growth may mean make optimal control difficult to achieve. In order to manage this balance, people with diabetes should measure blood glucose levels at least daily and ideally more often. Blood is taken by pricking a finger and the level monitored with a blood glucose meter.

Family support
A supportive family is probably the most important factor in ensuring that a young person with diabetes stays well. Parents offer practical support by providing healthy meals, picking up insulin supplies and accompanying their children to clinic appointments. Although some young people reported that their parents nagged them about diabetes and were sometimes over-protective, all respondents appreciated the care they got from families and some admitted they liked the extra attention they received because of having diabetes. One paediatrician who was interviewed for the study believed that the majority of patients who have poor control "come from families which are disrupted or disorganised. If you have a patient who has a problem with attending clinic regularly or generally has poor overall control, it often reflects the family situation".

Young people who do not have good day to day support from their family - and this could include those who have recently left home - may find it more difficult to manage diabetes successfully. Changing routines and new activities, such as drinking alcohol and staying up late, or the stress of exams, may affect blood glucose levels. It is important therefore that young people continue to consult with their health care team to ensure that their treatment fits best with their current lifestyle.

Health services
Health services for this group of young people should be accessible and acceptable to them. This means that clinics should be run at times when young people can attend and that staff should treat young people sympathetically, not bully or threaten them if blood glucose control is less than optimal.

Findings from the study show that hospital staff, and particularly diabetes specialist nurses, are popular with young people. Nurses’ practical advice and informal style was described as helpful and supportive and the continuity of care they provided was much appreciated. Some nurses were prepared to be flexible about when and where they saw young people, often making home visits. Over a fifth of young people reported that a nurse had visited their school in order to advise school staff about caring for a young person with diabetes either following diagnosis of diabetes or before a school trip.

Young people with diabetes are a diverse group living in varying circumstances and with various needs. However, unlike their peers at school and college, they are all in the process of taking on the responsibilities of managing diabetes as they grow to adulthood. This means handling the daily interactions of eating, taking insulin and exercising while also coping with the new demands of emerging independence.

Like their friends, these young people will be forging their identities, forming new relationships and perhaps experimenting with alcohol and drugs but they also face changes in their diabetes care and, possibly, discrimination at school or work.

They need understanding and support from their families, friends, staff at school and college and from health care professionals.

¹ Audit Commission, Testing times: A Review of Diabetes Services in England and Wales. Audit Commission, 2000

Jessica Datta is senior research officer at the National Children’s Bureau.

What young people say about having diabetes

"My diabetes doesn’t affect me in any way or stop me doing things. All my friends are aware of my condition and have no problems. I don’t think it has affected my life a lot - simply made me more responsible." (17 year old girl)

"When I first had diabetes, I felt like an outcast but now I accept it and most people, apart from some teachers, don’t treat me different. Diabetes can even get me out of things like PE and housework!" (16 year old girl)

"I am very negative about it... I feel it has to be one of the worst things that has happened to me in my whole life." (15 year old girl)

"As I’ve got older I’ve learned to accept being diabetic and I learned being different isn’t that horrible after all. Now I know doing blood tests and taking insulin is just part of my everyday routine. Diabetes is something that I’ve learned I’ve got to live with." (16 year old girl)

"I don’t like being diabetic but I haven’t got much choice. It affects my life sometimes but most of the time I’m fine." (15 year old boy)

"When I got diabetes it was a shock but I have fitted it in around all the sport I do and all the food I eat." (16 year old boy)