This research programme was commissioned as part of the first competition of Programme Grants for Applied Research (PGfAR). It is building on the education tool evaluated as part of the Dose Adjustment For Normal Eating (DAFNE) trial. DAFNE is a way of managing Type 1 diabetes and provides people with the skills necessary to estimate the carbohydrate in each meal and to inject the right dose of insulin.
The objective of this programme is to assess what elements of the DAFNE course, patient characteristics or experiences are critical to success.
The main aims of this programme are to:
1) to explore whether it is possible to identify the critical success factors and the right timing for training individuals in self management of Type 1 diabetes (which might inform self management of other long-term conditions).
2) Develop training in the use insulin infusion pumps (an expensive but potentially more effective form of delivering insulin) as part of a DAFNE self management course in a pilot trial compared to training in the use of insulin injections. This was in advance of an application to run a full trial to evaluate the use of insulin pumps in the UK.
3) The programme will compare a standard 5 consecutive day DAFNE course with one delivered over 5 weeks. If the longer course is as effective this will enable those who cannot take a full week off to undertake DAFNE, and allow centres where staff work part-time to deliver courses.
4) The programme will also develop a new course, based on psychological work undertaken by the research team, for those people who are experiencing problems with hypoglycaemia.
5) To develop a health economic model which applies to Type 1 diabetes and which can be used to assess the cost effectiveness of new technology in the management of Type 1 diabetes
The research examined patient experiences following patients’ conversion to flexible intensive insulin therapy (FIIT), a regimen in which quick acting doses of insulin are matched to flexibility in the intake of dietary carbohydrate. This approach is an alternative to strict management of diet and fixed regular doses of insulin.
The research in this programme included a series of semi-structured interviews with type 1 diabetes patients and a mixed methods exploration of the barriers. The interviews identified a number of reasons why information and education gaps exist among people with type 1 diabetes. These include a failure in the past to equip individuals with Type 1 diabetes with the skills to apply insulin treatment successfully, difficulty in sustaining successful self management in the absence of on-going and readily available professional support; and difficulties in interacting with other health care professionals such as GPs and practice nurses who also lack training in insulin self management.
The research highlights a need for ongoing patient education that does not assume that patients are equipped to maintain their knowledge and keep up with changes or advances in the knowledge base, a finding that might apply to other long term conditions. Other research findings show that despite the flexibility in diet offered by FIIT most patients, after an initial period of flexibility gradually reverted to a more rigid pattern of carbohydrate intake due to concerns that they will miscalculate carbohydrate and administer the wrong does of insulin. One possible consequence of FIIT is the increased consumption of pre-packaged, processed food since the carbohydrate content is easier for the patient to assess.
The work has found that there is no suitable scale measuring diabetes self management activities and has obtained a grant to develop an appropriate measure.
The group have used the successful pump pilot work to apply successfully for funding to conduct a large multicentre trial in the UK involving around 300 patients to measure the effectiveness of pump therapy in Type 1 diabetes (the REPOSE Trial).
Chief investigator: Professor Simon Heller, Sheffield Teaching Hospitals NHS Foundation Trust
Institutions: Sheffield Teaching Hospitals NHS Foundation Trust; University Hospitals Of Leicester NHS Trust; University College London; Northumbria Healthcare NHS Foundation Trust; University of Sheffield; King’s College London