Improving outcomes for young people with diabetes: use of new technology and a skills‐based training approach is urgently needed

The British Diabetic Association Cohort study (1972± 1993), a prospective follow-up of insulin-treated patients with diabetes diagnosed under the age of 30, showed increased mortality at all ages [1]. Avoidable metabolic complications such as hypoglycaemia and diabetic ketoacidosis accounted for most of the excess mortality among those < 30 years of age, but after 20 years of diabetes the impact of atherosclerotic macrovascular complications steadily increases [2]. The prognosis is particularly disturbing for children diagnosed with Type 1 diabetes (T1DM) under the age of 10 years; previous reports have indicated that 60% were dead within 40 years of diagnosis [3±6]. The Diabetes Control and Complications Trial (DCCT) established quite clearly that good glycaemic control can reduce the incidence and progression of microvascular complications [7]. The mean HbA1c of the intensively treated adult group was 7.1% compared with 8.1% in the conventionally treated group, and corresponding values for the adolescent group were 8.1% vs. 9.8%, respectively. Although a threshold was not established, data suggest that the risk of microvascular complications increases dramatically at HbA1c levels above 9% [8]. In the past there was concern that paediatricians adopted a `culture of optimism' and applied a less intensive approach to the management of young people with diabetes, perhaps accepting worse levels of glycaemic control than their adult physician colleagues [9]. Even as recently as 1998 the misconception that pre-pubertal glycaemic control is less important still appeared in authoritative paediatric textbooks [10], but these attitudes are changing. The dialogue between adult diabetologists and paediatricians has greatly improved, with shared aims and treatment targets. However, there is considerable scope for improvement, as illustrated by Mortensen's 18country study which highlighted large variations in average levels of glycaemic control between regional centres across Europe. The best centres (none of them in the UK) reported a mean HbA1c of 7.9% in apparently unselected populations, while others could achieve only 10.2% [11]. An audit of Scottish paediatric centres showed a marked variation in HbA1c and mean values in the region of 9.1% [12], but very few data are available from elsewhere in the UK. How do specialist adult diabetes services in the UK compare with respect to provision of care and outcomes for young people under the age of 25 years? We have little idea. Non-attendance at any clinic is more common in this group and the prognosis of these non-attenders is known to be worse than those who remain within the hospital system. In Southern Derbyshire the glycaemic control and complication status of 150 young people aged 16±25 years with T1DM was recently audited. All were diagnosed before their 16th birthday. Thirty-seven percent had retinopathy, 29% microalbuminuria or overt proteinuria and the mean fructosamine was 470 mmol/l (equivalent to an HbA1c of approximately 10%). Three young people had committed suicide, one had a stroke at the age of 21, and one was already registered blind. Bilateral cataracts had been removed in three others. These worrying statistics are probably typical of elsewhere in the UK, but we simply do not know. Diabetes UK in conjunction with paediatricians in England and Wales have established a voluntary diabetes register of children with T1DM but, with a few notable exceptions such as the DARTS database in Tayside, the increasing number of district diabetes registers has provided little in the way of published data for the under 25's by which we can bench-mark our practice. There is some evidence that bad habits acquired in the ®rst year after diagnosis are hard to change and that patients who achieve good glycaemic control in the ®rst 5 years do better in the longer term [13]. The relative risk of microalbuminuria increases four-fold if HbA1c exceeds 7.5% during this period [14]. The DCCT suggested that tight glycaemic control in the early phase of the disease might preserve some residue of pancreatic insulin production [15], but this is unlikely to explain the differences between Linkoping in Sweden and Derby in the UK. Ludvigsson has repeatedly shown that his cohort of young people in Sweden consistently achieve a mean HbA1c of 7% [16]. They all start multiple injection therapy from diagnosis but equally impressive results have been published from Dorchy in Belgium using a twice daily insulin regime [17]. Both centres report much lower incidences of severe hypoglycaemia than in the adolescent arm of DCCT [18]. So what is the difference? Over the last two decades UK physicians have steadily moved away from the proscriptive authoritarian doctor model to that of a professional friend. Empowerment produces behavioural change when selfcon®dence is combined with the appropriate knowledge and skills. We would argue that this has not been adequately achieved, partly because we have not been honest enough with patients about the consequences of poor long-term metabolic control, nor given them the tools needed to manage their diabetes well. For example,