Self-management programmes for diabetes patients

To someone who does not have a long-term condition, the concept of self-management may seem vague and insubstantial. But for those in that position, it can either be a life sentence or a lifelong journey.

‘Diabetes doesn’t come with a manual, people need to be given opportunities to understand their disease’

Self-management is an acknowledgement that the person with diabetes is the one with the disease 24/7, and that the day-to-day choices they make about their lifestyle, diet and medication are their own decisions. 

But diabetes doesn’t come complete with a manual or operating instructions. So people need to be given opportunities to understand their disease, what it will mean for them in the short and long term, and to acquire the tools and skills they will need to be successful self managers.

If not, then no amount of GP, nurse or dietitian appointments are going to change lifestyle, health behaviour, or quality of life. 

Structured education is one of the key means to achieve good self-management. This is an opportunity for individuals to gain self-management skills via a formal process run by trained facilitators commonly styled as “educators”.

Philosophy of care

Some programmes are for groups, others are one-to-one interventions. While the content of the programmes is likely to be similar, the philosophy which informs them, the style in which they are delivered and the theories of learning underpinning them may be very different − and lead to different results.

‘Everyone has different learning styles and programmes should represent as wide a variety of them as possible’

There may also be a difference in who delivers the programme. For example, a healthcare professional or a lay person, which may have a bearing on an organisation’s capacity to offer a particular form of structured education.

In the UK, the National Institute for Health and Clinical Excellence set out recommendations in 2003, which were later expanded into a set of standards and criteria that any structured education programme in diabetes needs to meet to be worth its salt.

You want a programme that delivers results? Then be aware that a programme has layers. At its core needs to be a philosophy of care − focused on the patients and encouraging a self-management approach, rather than adopting a medical one.

Your programme of choice will have specific aims and objectives, and should use explicit psychological theories to support the choice of content and the style of delivery.

The curriculum for the programme should be written down. If the programme is of a good quality, the written material and accompanying resources will demonstrate attention to the needs of the educators and the patient participants. 

Everyone has different learning styles and programmes should represent as wide a variety of them as possible in order to be suitable for the broadest audience.

Consistency and quality

If your population is a multi-ethnic one, you may also be seeking a programme which has been culturally adapted, rather than simply translated into another language, to take into account different attitudes, situations and beliefs.

‘No programme without evidence to demonstrate its effectiveness should be considered for adoption’

There is evidence that the style of delivery is key to supporting good patient outcomes, so the training of educators delivering structured education is critical. Not only does good training equip educators to progress in competency, paying as much attention to mentorship as to assessment, but it ensures consistency and quality.

Educator accreditation is an essential part of a quality assurance process that should be more than a tick-box exercise to be of value. Not only should educators be assessed, their trainers should as well, not to mention the education environment, the patient experience and outcomes from the programmes. 

It’s a short journey from here to audit, which is often omitted by organisations who overcome all the preceding challenges. But without audit, how will an organisation know if the programme is being delivered as it should? That patients are achieving better and more meaningful outcomes? That public money is being well spent?

Lastly, no programme without evidence to demonstrate its effectiveness should be considered for adoption.

Complex interactions

Until quite recently, the evidence base for structured education was poor. Not because of a lack of interest or expertise, but simply because structured education and people’s responses to it comprises a series of complex interactions, taking place in the real world and potentially confounded by any number of factors. This makes education interventions complex and costly to research with an appropriate degree of rigour.

However, since 2003, several programmes, particularly in the UK and Europe, have reported study results, with outcomes from follow up data of between 12 and 36 months.

Although outcomes are varied, depending on their particular aims and objectives, they include: lowering of glycated haemoglobin (HbA1c) by a clinically significant amount; lowering of other biomedical outcomes such as blood pressure and cholesterol, weight reduction, reduced waist circumference, increased smoking cessation, increase in physical activity, positive changes in health beliefs and reduced incidence of depression; and self-reported improved dietary choices.

These positive outcomes can be extrapolated into a reduction of cardiovascular risk in the long term, which will benefit clinical commissioning groups in respect of reductions in surgical procedures, hospital admissions and length of stay, and drug expenditure.

Next month we will explore how to make the introduction of self-management programmes a reality, who needs to be involved and how much it will cost.

Dr Marian Carey is national director at the DESMOND programme, writing on behalf of the Leicester Diabetes Centre research and education writing group