Retrospective review of care and outcomes in young adults with type 1 diabetes

Introduction

The national service framework for diabetes includes standards to improve care and outcomes for young people.1 Good glycaemic control delays the onset and progression of microvascular complications, but control can be difficult to achieve, particularly in young people.2

Participants, methods, and results

We did this study in four of the important centres for the care of people with diabetes—Derbyshire Royal Infirmary; University Hospital, Nottingham; Northern General Hospital, Sheffield; and Leicester Royal Infirmary. Each centre has a dedicated clinic for young people.

We searched for people aged 16 to 25 who were being followed up for type 1 diabetes. We collected data retrospectively from case notes and computer records on glycaemic control, completeness of screening for and prevalence of complications of diabetes, hypertension, and clinic attendance.

Of the 397 patients included, mean HbA_1c concentration was 9.5% (SD 2.0%). (The assay was standardised to that used in the diabetes control and complications trial2; the upper limit of the reference range for people without diabetes is about 6%.) Glycaemic control was similar in 31 patients who had not had a recent measurement of HbA_1c concentration—their mean fructosamine concentration was 404.9 (93.9) μmol/l (reference range 230-280 μmol/l).

Screening rates and the prevalence of complications varied between centres (table). The low prevalence of retinopathy in centre 2 was confirmed by an independent review of case notes.

Thirty four patients (15% of those tested) were hypertensive (systolic blood pressure was at least 140 mm Hg or diastolic blood pressure was at least 85 mm Hg). Of these, 24 (71%) had been tested for excretion of protein by the kidneys. Ten (42%) had proteinuria or microalbuminuria and eight of these were taking angiotensin converting enzyme inhibitors.

Comment

For young adults with type 1 diabetes in this study, glycaemic control is generally poor, attendance at the clinic and screening for complications are suboptimal, and microvascular complications are common. Achieving good glycaemic control in youth yields future health, quality of life, and cost benefits but is difficult for many psychological and social reasons. Cooperation between paediatricians and diabetologists should provide a smooth transition of care from childhood to adulthood; many centres have clinics for young adults. Previous studies of young adults in the United kingdom found poor glycaemic control.3 In our study, control was comparable to that of conventionally treated adolescents in the diabetes control and complications trial.2

Some European cohorts have lower mean concentrations of glycated haemoglobin,4 perhaps due to structured programmes teaching self management. The dose adjustment for normal eating (DAFNE) programme, based on a programme used in Germany, was a success in the United Kingdom and is being evaluated on a wider scale.5

Each 1% fall in HbA_1c concentration leads to an estimated fall of 30% in the risk of microvascular complications.2 Patients in our centres are at more risk than patients in centres with lower mean HbA_1c concentrations. Also, the prevalence of complications in our study concerns us. Screening for complications is suboptimal, partly because of poor attendance rates. Young adults may have difficulty complying with traditional clinic systems, and non-attenders are at greatest risk of complications. The attendance rate was highest in the centre that offered appointments in the evening and reminded patients by letter or telephone. All centres in this study had limited resources, with inadequate access to dietetic and psychological services in particular.

We are failing to achieve high standards of care for young adults with diabetes—a problem which is likely to affect the entire United Kingdom. To improve standards of care, we need to evaluate and share outcomes of practice, examine reasons for poor outcomes, and learn from (European) centres that achieve better results.