This programme of work set out to answer a series of related RQs, which are summarised in the previous sections. These questions have generated ideas for future research, which are outlined in the next section. However, they also have implications for current and future clinical practice, which is the subject of this section. We have been careful not to speculate beyond the results of the research work.
Both the RCT and the observational data confirmed that systematically teaching adults with type 1 diabetes the skills to use and adjust insulin safely was highly valued by DAFNE participants and resulted in marked falls in the risk of severe hypoglycaemic episodes or admissions with uncontrolled high blood glucose values. The overall level of blood glucose control as measured by HbA1cimproved by less than
in the original DAFNE trial. Nevertheless, the health economic analyses still showed that with these outcomes the intervention was cost-effective and generally cost-saving.
These findings strongly support the importance of providing high-quality structured training to support the skills of diabetes self-management to all individuals in this age group. The DAFNE intervention is characterised by a full 5 days of training delivered by diabetes educators who are formally trained and who undergo regular peer review to ensure that the programme is delivered as designed and to a high standard.
However, DAFNE training is provided in only around one-third of secondary care diabetes units in the country. Other centres often deliver training that is of a shorter duration, without a written curriculum, using educators who have had minimal or no formal training to deliver structured education. Furthermore, many centres are running structured education courses without any form of independent assessment of their ability to deliver courses as designed.
External peer review of teaching is expensive, requiring the provision of resources to pay the reviewer both for their time and for travel. It is a major cause for concern that commissioners often refuse to fund courses (such as the DAFNE programme) that include peer review on the grounds of cost.
It may also be the case that, when centres attempt to save money by reducing the length of the course, failing to undertake peer review or limiting the number of educators providing training, the course that they provide is less effective. Such courses may then fail to provide adults with diabetes with the skills that they require to self-manage their condition effectively. Indeed, there is evidence that shorter courses fail to improve blood glucose levels or the incidence of hypoglycaemia99and have only minimal positive effects
on some psychosocial outcomes.
During this work we explored whether or not outcome data from participants could be collected as part of routine clinical delivery with minimal additional financial input. We had hypothesised that these results could be used to compare outcomes from different centres and identify those centres whose results were poor in terms of glucose control or failing to reduce the incidence of episodes of hypoglycaemia. However, we found that clinical teams struggled to consistently collect even a relatively modest set of data items. We concluded that if additional outcome data (e.g. rates of hypoglycaemia) are to be collected and used in clinical practice then additional resources, mainly administrative, will need to be found.
The challenges that participants face when they are reviewed by diabetes professionals who are not DAFNE trained also has implications for a diabetes unit. In many centres only two or three of the clinical team undertake DAFNE training on the grounds of cost. This means that patients often see professionals following their course who are unfamiliar with the approach. This is a major barrier for patients in sustaining DAFNE self-management skills. Thus, the clinical implication for DAFNE centres and their teams is that as many professionals as possible should be DAFNE trained (or at the very least be aware of the principles of diabetes self-management as taught in their own centres).
This principle also extends to primary care teams. Most people with type 1 diabetes receive their care in secondary care settings. However, DAFNE participants are frequently asked to attend their GP surgery or will see a GP or practice nurse for reasons other than diabetes. It is likely that problems with diabetes may well be raised at these visits, in between hospital appointments. It is therefore important that primary care teams are aware of DAFNE principles, including the need to allow DAFNE participants to use as many glucose strips as they need to manage their diabetes effectively. In rural areas, where access to hospital is limited, primary care teams have also been trained to deliver DAFNE courses very successfully.
Much of the work undertaken in this research programme applies to other long-term conditions, such as type 2 diabetes, cystic fibrosis and home renal dialysis, in which patients are required to learn and administer quite complex health-related self-management skills. Perhaps the most important finding from our work is that, although many participants find that a brief, time-limited intervention teaching skills alone enables them to manage their condition in the short term, many struggle to maintain this over months and years. Thus, the need for structured ongoing professional support to ensure that those with long-term conditions sustain effective self-management is an important generic message.
Another important learning point from our work is that merely providing skills does not necessarily lead to desired changes in behaviour. We now believe that structured training/education courses should
incorporate emerging theories of behaviour change. This may lead to better and more sustained outcomes; a hypothesis that applies to other long-term conditions.
Finally, although we found it challenging to collect outcome data in routine clinical practice, with additional administrative support we were able to compare outcomes between different centres. We showed that centre differences did exist and that some achieved better outcomes in terms of glucose control and hypoglycaemia than others. It was beyond the remit of our work to explore what lay behind these differences but an important component of future work should be to investigate the reasons for these differences. This would include educator behaviour, the fidelity with which the intervention is delivered and a detailed analysis of case mix.
Proposals for future work
1. Perhaps the most important finding of this programme was that teaching the rationale behind and the skills of FIIT in a stand-alone intervention was insufficient to ensure that most individuals initiate and sustain effective self-management. We now strongly believe that long-term conditions need integrated skills training and structured lifelong professional support. Thus, structured education in self-management needs to include a package that instils the principles of self-management and then supports individuals and their families to achieve success. This should be applied to other long-term conditions.
2. We should modify the current DAFNE curriculum to incorporate the emerging understanding of behaviour change to instil and habituate key self-management behaviour in addition to
key competencies.
3. An assessment of numeracy, critical for insulin dose adjustment and CP counting, may help to identify the need for additional training/support.
4. Technological innovations to reduce the complexity of insulin dose calculation, record keeping and blood glucose pattern recognition combined with addressing behaviour change domains (knowledge, motivation and goal setting) are important areas to incorporate into improved educational interventions seeking to improve diabetes self-management.
5. Models of structured follow-up involving professionals warrant development and evaluation. Technological interventions may contribute to overcoming the barriers identified above and enable participants to incorporate effective self-management strategies and behaviours into their
everyday lives.
6. We should seek funding to conduct a multicentre RCT of the DAFNE-HART intervention for individuals with hypoglycaemia unawareness.
7. In future work we should ensure that users contribute to all elements of the research, including the workstreams that should be included, what aspects of technological support we might develop and how they should be designed.
8. We should ensure that future work includes a detailed assessment of the fidelity of educational interventions, including the extent to which educators maintain the principles on which DAFNE training is based.