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Developing and piloting a structured, stepped approach to patient education

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Marian Carey, DipPS, BA (Hons), PhD.

Project Manager for the DESMOND Collaborative

Health-care professionals working in chronic disease management recognise that effective self-management by patients is essential to the control of the condition and to patients' psychosocial well-being. In the case of diabetes, and especially Type 2 diabetes, motivating and engaging patients in sustained self-management is crucial not only in terms of reducing the risks of complications, but also in maintaining the effectiveness of diabetes services.

Health-care professionals working in chronic disease management recognise that effective self-management by patients is essential to the control of the condition and to patients' psychosocial well-being. In the case of diabetes, and especially Type 2 diabetes, motivating and engaging patients in sustained self-management is crucial not only in terms of reducing the risks of complications, but also in maintaining the effectiveness of diabetes services.

This article looks at what constitutes a good structured education programme in the context of recent policy documents, with specific reference to the Diabetes Education Self-Management Ongoing and Newly Diagnosed (DESMOND) programme, an initiative for people newly diagnosed with Type 2 diabetes.

The majority of people with diabetes have Type 2 diabetes, the incidence of which is growing by 15% a year in some areas of the country (National Diabetes Support Team, 2004).

Diabetes has a major impact on people's physical, psychological and social well-being. It can affect their health, life expectancy, relationships, quality of life, work status and economic well-being. As in the case of all chronic conditions, diabetes affects not only the individuals concerned, but also their families and carers.

In the NHS, experience has shown that to meet the needs of people with diabetes, the health service has to change the way it delivers diabetes care by encouraging innovative practices and by developing the relevant skills and expertise in its workforce.

Policy and practice
While much progress has been made in some areas in the past 10 years, the so-called postcode lottery has meant that there has still been great variation in the quality of care delivered. Government policy and service developments, such as the National Service Framework for Diabetes (DH, 2001), have spearheaded a drive to address this inequality by setting goals aimed at achieving high-quality care for people with diabetes at the point of access, wherever they live.

The NSF for Diabetes consists of a framework of 12 standards (DH, 2001), plus a delivery strategy for their implementation (DH, 2002). Education is considered to be a fundamental part of diabetes care, and every contact between a health-care professional and a person with diabetes should include an element of education - in the broadest sense of the word.

For example, the aim of Standard 3 of the NSF (Empowering people with diabetes) is to ensure that the patient is enabled 'to enhance their personal control over the day-to-day management of their diabetes in a way that enables them to experience the best possible quality of life' (DH, 2001). This highlights an important principle - namely, that people with diabetes themselves have ultimate responsibility for the day-to-day control of their condition.

In the area of patient empowerment, the role of health-care professionals is to equip individuals with the necessary knowledge, skills and competences to enable them to make decisions about effective self-management - in other words, education needs to be structured if it is to achieve its goal.

But what are the characteristics of successful structured education for patients?

An appraisal of patient education models by the National Institute for Clinical Excellence in April 2003 (NICE, 2003) found a number of programmes in operation. The exercise acknowledged that several positive initiatives were in place, but it also concluded there was wide variation between the length, style and content of programmes. NICE noted that some were unstructured and few had been formally evaluated. It further concluded that few of the individuals delivering education programmes had received formal training to do so.

As a result of these findings, NICE was unable to recommend any model of structured education to people with Type 2 diabetes. However, it did produce guidance on what elements should be in place for ensuring the provision of good-quality structured education, and planning for how such programmes should be evaluated and audited (see Table, above).

The guidance has implications for the training and accreditation of health-care professionals involved in education programmes. They must now receive training in both diabetes management and adult education principles and delivery techniques. A quality assurance programme to monitor the compliance of educators with these principles and techniques must also be put in place.

In terms of evaluating the programmes, NICE highlighted the lack of high-quality and scientifically robust trials of patient education models in diabetes, particularly with regard to Type 2 diabetes, and stressed the need for further research. Many existing patient education models do not describe the intervention in sufficient detail to enable it to be reproduced elsewhere. There is also a lack of evidence on what length of intervention or frequency is most effective. Poorly described and complex interventions make it impossible to ascertain which aspects of the various interventions influence outcomes.

NICE recommended that further research should involve randomised controlled trials, with their design based on explicit hypotheses and educational theory. Such studies should be focused on a range of projected outcomes, and the trials should have long follow-up periods (NICE, 2003).

The DESMOND initiative
These NSF for Diabetes and the NICE guidance provided the springboard for setting up the DESMOND Collaborative. The group brings together more than 40 people from across the UK, including professionals from some 15 diabetes' services, people with diabetes and patient representatives.

The collaborative set itself the goal of developing a structured education programme consisting of staged modules. The first stage was targeted at people newly diagnosed with Type 2 diabetes, and the second will provide ongoing education for those who have lived with the condition for some time, and as a next step for those newly diagnosed. Subsequent modules were intended to be topic specific.

The intention was that the education model and the routine clinical management of diabetes would combine to provide a care pathway, thus integrating education and care for people with Type 2 diabetes throughout their lifetime.

Starting with the beginning of the patient 'journey', the DESMOND Collaborative focused the first module on the point of diagnosis. The programme delivers six hours of structured group education in a primary care setting for up to 10 people newly diagnosed with Type 2 diabetes.

It was essential to have a detailed written curriculum to enable standardised delivery of the programme, and to contribute to the description of the educational intervention so that the programme could be reproduced by other services. The educators or facilitators delivering the programme are health professionals working in the community: practice nurses, diabetes specialist nurses or dietitians. The programme uses specifically produced patient support material compliant with the programme's philosophy of using a non-didactic style. Educators may add to their own resources by using local material or general leaflets from other bodies, such as Diabetes UK.

Educators have been trained to deliver DESMOND through an initial two-day residential course to equip them to deliver the programme to patients, followed by participation in a quality assurance programme. The training programme has been devised by a multidisciplinary team drawn from the collaborative and mandated to develop a competency and quality assurance framework to be piloted as part of a wider trial. Work is also ongoing to secure programme accreditation.

The programme has been piloted in 17 primary care trust sites in England in 2004, taking DESMOND to more than 180 patients newly diagnosed with Type 2 diabetes. Following feedback from educators, local co-ordinators, patient participants and health-care professionals from GP practices, the curriculum, training course, patient materials and procedures were reviewed and revised prior to a randomised controlled trial of the programme which began in mid-September 2004; the results will be reported in 2006.

So how does DESMOND differ from other structured education programmes, and why should it be preferred to them? While the curriculum is neither unusual nor radical - since it is based on topics health professionals would expect courses for people newly diagnosed with Type 2 diabetes to include - the initiative is unusual in that it has a theoretical and philosophical basis.

The DESMOND philosophy informs the entire structure of the programme, from choice of curriculum topics to the training programme for educators, and a style of delivery that is centred on the individual circumstances of the participants (see box, above right).

The programme supports patients in identifying their own health risks and responding to them by setting their own specific behavioural goals. Such an individualised approach is believed to encourage patient motivation.

Supporting people to self-manage their condition is essential in helping them to attain their goals. However, professionals need to remain aware that self-management may occasionally be compromised by the onset of depression, which can often accompany the experience of living with a chronic condition such as diabetes.

While it is important not to minimise the negative aspects of diabetes, such as those relating to the complications of the condition, formulating an action plan to deal with these can enable people to think positively and give them control of their situation.

Feedback and outcomes
Feedback from the DESMOND pilot has been positive. Health professionals have gained new, transferable skills as educators, and patients have been full of praise for their experience. The programme has also raised awareness of diabetes issues in primary care, and has helped to strengthen links between primary care and specialist secondary services in some areas.

While this is an indication of an excellent start, is this alone sufficient to give DESMOND the NICE seal of approval? A comparison against NICE criteria, as stated in the 2003 guidance, shows that DESMOND has taken account of all the main recommendations (see box, facing page). The forthcoming randomised controlled trial will meet the specifications for research also put forward in the NICE appraisal document.

The final trial outcomes are due in 2006. Until then, members of the DESMOND Collaborative will continue to apply their unique approach to related projects: initial work on the next stage, the ongoing model of education; development of the DESMOND ethnic minority module; and a qualitative substudy of the randomised controlled trial. DESMOND may be a new name on the block - but we believe it is here to stay.

Latest Policy
National Service Framework for Diabetes

STANDARD 3: EMPOWERING PEOPLE WITH DIABETES

- All children, young people and adults with diabetes will receive a service which encourages partnership in decision-making, supports them in managing their diabetes and helps them to adopt and maintain a healthy lifestyle. This will be reflected in an agreed and shared care plan in an appropriate format and language. Where appropriate, parents and carers should be fully engaged in this process.

Source: Department of Health, 2001

Authors' contact details
Marian Carey, DESMOND Project Manager, Diabetes Research Team, Level 1 Victoria Building, Leicester Royal Infirmary, Infirmary Square, Leicester LE1 5WW. Email: marian.carey@uhl-tr.nhs.uk

Heather Daly, Consultant Nurse Diabetes, Diabetes Unit, Victoria Building, Leicester Royal Infirmary, Leicester LE1 5WW. Email: heather.daly@uhl-tr.nhs.uk

Further information
DESMOND Project. (2004)Keynotes 1. Leicester: The DESMOND Project. Website: www.desmond-project.org.uk

Department of Health. (2001) National Service Framework for Diabetes: Standards. London: DH.

Department of Health. (2002)National Service Framework for Diabetes: Delivery strategy. London: DH.

National Diabetes Support Team. (2004)Welcome page. Available at: www.cgsupport.nhs. uk/diabetes (Accessed September 6, 2004).

National Institute for Clinical Excellence. (2003)Guidance on the Use of Patient-education Models for Diabetes (Technology Appraisal 60). London: NICE.

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