Summary

KICk-OFF is a five-day structured education course for 11- to 16-year-olds with type 1 diabetes. The aim of the course is to develop self-management skills around carbohydrate counting and insulin dose adjustment and to encourage participants to be able to manage their diabetes more effectively in everyday life. The curriculum was designed with input from school teachers to meet a variety of learning styles. When compared to ‘usual’ care, children involved in KICk-OFF have demonstrated improved quality of life measures and significant improvements in glycaemic outcomes.

Results

A variety of outcome measures evaluated biomedical and psychological outcomes and a health economic analysis took place. Evaluation was undertaken at baseline, and after 6, 12 and 24 months. Primary outcome measures were HbA1c and quality of life (generic and diabetes specific). Secondary outcomes were fear of hypoglycaemia, self efficacy, severe hypoglycaemic events, diabetic ketoacidosis, change in BMI and change in diet. The economic analysis used validated questionnaires for assessment of QALY’s and will also employ recognised modelling techniques to assess possible long term benefits in terms of health service costs. 

At present only the primary outcomes have been analysed and at six months significant improvements in social and physical quality of life are seen. 
It appears that KICk-OFF participation has produced a short term improvement in quality of life. In the longer term, those with the worst diabetes control at baseline have improved their glycaemic control significantly by two years post-intervention. This is the group at most risk of long term complications so if improved glycaemic control is sustained, they will have considerably reduced their risk.

Challenge

Self-management is an essential component of diabetes care but a literature review highlights generally poor quality research, with small sample sizes and short duration follow-up. Very few educational interventions for children and young people (CYP) have been shown to offer long-term benefit. However, in countries such as Germany, where repeated structured education is delivered by well-trained staff, an impressive improvement in mean HbA1c levels has been shown. In contrast, the glycaemic outcomes for children and young people in the UK remains static and depressingly poor, demonstrating a clear need for well-validated education packages, delivered by appropriately trained staff.

DAFNE courses for adults are an acknowledged intervention but nothing similar exists for CYP. The aim of KICk-OFF was to develop and evaluate a course designed to meet the learning needs of adolescents with Type 1 diabetes.

It has taken over 10 years to reach this final stage of the project, a cluster randomised controlled trial. Previous phases involved literature reviews, focus groups with CYP and families, theoretical modelling, producing a curriculum and a pilot evaluation. The curriculum has undergone revision as a result of the pilot evaluation and changes to current guidelines.

Objectives

The cluster randomised controlled trial aimed to discover whether participation in a KICk-OFF course improves biomedical and psychological outcomes for 11-16 year olds with Type 1 diabetes, and measure cost-effectiveness.

The curriculum is designed to be interactive and encourage experiential learning. It employs constructivist learning theory, building on existing knowledge and skills. It is delivered to up to eight young people at a time, in age banded groups (11-13 years and 14-16 years) and aims for participants to enjoy developing self-management skills and benefit from interaction with others. 

Teaching groups of young people for five consecutive days is a new experience for diabetes health care professionals. They need to be able to facilitate group work, manage challenging behaviour and ensure that each child reaches their learning objective.

To this end, a unique teaching skills course (delivered by Sheffield Hallam University) was created which includes a day spent in a secondary school observing and delivering group education. This course was attended by all staff (research and NHS) involved in the KICk-OFF study, has received excellent feedback and is now established as a generic course for health care staff.

Solution

A literature review was undertaken, CYP and parents were involved in course design, an age appropriate curriculum was developed with the help of school teachers and a pilot evaluation, involving 48 CYP from three centres, took place. We also ensured the curriculum reflected current guidance. The teaching skills course for health care professional was evaluated and increased from three to five days.

Thirty-one UK centres were used to recruit 486 CYP. Centres were randomly allocated to deliver KICk-OFF or continue with local education. To minimise inter-educator variation we trained three teams of educators – three paediatric diabetes nurses and three dieticians. A total of 31 courses were delivered to 199 CYP in the intervention centres and their parents/carers had a one day course outlining the main principles of KICk-OFF. Independent education experts observed and evaluated the organisational elements, teaching styles and skills of the educators and assessed whether the curriculum was engaging and learning objectives met.  

Courses were delivered in a variety of venues to determine which learning environment CYP preferred. Non-hospital sites were most appropriate and allowed the young people to take more ownership of the course and feel more relaxed.

Evaluation

Educators need considerable knowledge and skills to deliver effective group education to CYP and our training skills course has been positively evaluated. The intervention group participants were initially reticent and anxious but group cohesion was visible by the end of the first day and the drop out rate was low. The groups often kept in touch for mutual support afterwards. It appears therefore that the model of five consecutive days has a value in providing peer support as well as the benefits of learning with people of a similar age.

A supporting website was created but was not well used and added little, if anything, to the project because CYP keep in touch through their own social networks. A significant beneficial effect on glycaemic control was only seen after two years – it appears to take time for CYP to assimilate knowledge and change their behaviour. There is very little well-designed research into educational interventions for CYP. 
KICk-OFF is the only skills training course that has been subjected to rigorous evaluation with long duration follow-up, and which includes the education profession in design and evaluation.

Impact

The development of KICk-OFF in Sheffield has made the team examine current educational practice. Nursing and dietetic staff attended the teaching skills sessions and the skills learned can be applied to all age groups.

While KICk-OFF was delivered within a research project, one course has been successfully held in Sheffield using the local multidisciplinary team. The Sheffield team would like to roll out KICk-OFF courses in Yorkshire and eventually across the UK. Initial discussions have been held to explore the possibility of KICk-OFF falling under the umbrella of the DAFNE co-ordinating centre. This would ensure the courses are all delivered as per curriculum through peer review, and biomedical data collected to assess the impact of the course on the CYP diabetes control.

The Dasman Diabetes centre in Kuwait is translating the curriculum into Arabic and plans to deliver several courses in the next year. It will also collect outcome data, allowing further evaluation of KICk-OFF in a different but real-life setting.