Summary
The key to success in paediatric diabetes care is that children and their families receive consistent messages from clinical staff at all points of the patient’s diabetes journey. The team in Leeds worked in partnership with patients and parents alongside the staff at the University of York to develop a comprehensive training package for healthcare professionals to be delivered annually. A workbook is given to families at the time of a child’s diagnosis which in turn is linked to a website with further useful information about living with diabetes. There is also a series of structured tutorials based on an educational diabetes curriculum, and further education in the form of pump training with a pump workbook, conversation map and review courses. Data demonstrates that patients are satisfied with the self-management education and there have been improved outcomes related to HbA1c results.
Results
Key results are reflected in high patient satisfaction of the self -management education training courses and improved outcomes related to Hba1c results. Demand for places on the University of York Diabetes Modules in CYP Diabetes Care and Insulin Pumps Therapy has continued to increase year on year.
Improving self-management can cause a significant improvement in mean clinic HbA1c values, the benefits of which have been clearly demonstrated in several studies. It has not been possible to identify an HbA1c value below which the risk of complications is eliminated but the value of 8 per cent seems to be an appropriate threshold beyond which the risk of severe microangiopathy rises substantially. A well-known DCCT study found that a 10 per cent reduction in HbA1c is associated with considerable risk reduction of progressive retinopathy. It can therefore be assumed that the 5 per cent improvement in our HbA1c over four years might reduce the risk of micro-vascular complications by 15-20 per cent.
Challenge
Type 1 diabetes is a chronic metabolic condition that is treatable but not curable. Good blood glucose control allows patients to continue a healthy lifestyle. Poor control, particularly in children, is associated with early onset, severe and crippling complications and premature death. Control in the UK, based on the National Paediatric Diabetes Audit (NPDA) is poor compared with many mainland European countries and the main discrepancy appears to be in the diabetes training of the staff delivering the self-management education programme to patients and their families. There are also marked differences in how the education programmes are delivered to these patients/parents, especially at the time of diagnosis.
Objectives
An important marker of successful management of diabetes is based around the HbA1c test. This is a quantitative reflection of the average blood glucose level over three months. Good control is below 58mmol/mol (7.5 per cent) and poor control is above 75mmol/mol (9.0 per cent). Poor control is associated with the premature development of micro- and macrovascular complications and premature death. The Leeds project aimed to increase the number of children with good HbA1c control and decrease those showing less effective management. This was to be achieved by working with parents/patients through focus groups, the University of York and the Leeds team as a whole to improve the pathway of care from day one of diagnosis for all children with Type 1 diabetes. This included in-patient management, literature at diagnosis, outpatient support and follow up.
Solution
A key to success was the commitment of the whole diabetes team to a cycle of continuous improvement in the delivery of care. This would help patients achieve complication-free lives. After visiting successful services (Rotterdam, Hannover, Gothenburg) an ‘awayday’ produced a three-year action plan and identified a clear timetable. Key areas were noted as: Use of a database and regular reports; use of technology to download meters and pumps; a complete update of literature and development of both a workbook for new type 1 patients and for those wanting to try an insulin pump; a website with patient and parent feedback; schools liaison and training of teachers; and training courses for staff related to children’s diabetes and pump management.
A series of initiatives included an external review of the Leeds Diabetes Team’s efficiency and organisation, a review of educational literature for parents/patients, creating a workbook for insulin pump patients and a workbook for children with newly diagnosed Type 1 diabetes. It was also necessary to create a database of all patients, designed around the Best Practice Tariff (BPT) and establish a robust clinical governance structure.
Evaluation
It is crucial to get good diabetes control from the onset of the condition and maintain it throughout childhood, adolescence and into adult life. This requires a structured self-management education programme for children and families with good supporting literature and a clear curriculum delivered by highly trained, motivated staff.
The annual mean HbA1c in a clinic is used by the NPDA as an important marker of how successful that clinic is in caring for its patients and this project’s 5 per cent reduction represents a considerable gain.
The improved quality of Leeds diabetes service was achieved by undertaking a critical analysis examining the way the team worked, with a view to offering patient-centred care on a daily basis. By adopting a service delivery model used successfully in other European countries, Leeds was able to improve both efficiency and productivity. This allowed technology to be routinely adopted into everyday clinical care to the benefit of patients, their families and the staff caring for them.
Impact
These initiatives could easily be adopted by all CYP diabetes teams across England. In Yorkshire over half the teams are now downloading pumps and meters and more are planning to follow suit. The highly successful peer review programme, now rolled out nationally, has disseminated good practice and encouraged the reorganisation of clinics, resulting in improved efficiency and data collection for the NPDA.
Evaluation demonstrates that patients and parents find that viewing results in clinic helps them develop a better understanding of the rationale behind the guidance given for ways to improve their self-management and problem solving skills. In addition, a highly motivated staff team has achieved better clinical outcomes by simply reviewing working arrangements, adopting technology and auditing clinic results regularly with a commitment to making continuous improvement within a good governance structure. All of this has been achieved with no significant financial investment.
