One person is diagnosed with diabetes every 3 minutes in the UK (Diabetes UK, 2009). Regardless of how much time is spent with the healthcare team to care for this condition, the individual with diabetes self-manages 24 hours a day, 365 days a year. It is a huge commitment, suddenly and unexpectedly placed on a person untrained in health and diabetes at diagnosis.
To ensure the best outcomes for these people it is essential to involve them in their own care, and measures to promote empowerment and collaboration through information and education are key to successful self-management.
Empowerment and care planning
The concept of “empowerment” relates to the partnership between a person with the condition and their healthcare professional, and can be defined as the latter helping the former to discover and develop the inherent capacity to be responsible for their own life (Funnell et al, 1991). It requires an initial understanding of what the treatment pathway is trying to achieve, and is a continual, information-sharing process, encompassing learning and behaviour change, which aims to allow the person to take responsibility for their own decisions (Meetoo and Gopaul, 2004).
For empowerment to be effective it is key that people have the right information to enable them to make informed choices, if they have the capability and desire to do so. They need to be able to agree plans and set goals with the help of their care team, and to do this they need to understand the seriousness of their condition.
The National Service Framework (NSF) for Diabetes: Standards (Department of Health [DH], 2001) set out to ensure that people with diabetes are empowered to enhance their personal control over the day-to-day management of their condition. Implications for service planning were highlighted, detailing how the NHS and partner agencies “will need to develop, review and audit programmes for empowering people with diabetes” (DH, 2001), including:
- Behavioural change programmes.
- Structured education programmes.
- The provision of information about diabetes and its management.
- Effective care plans.
- Patient-held, accessible records.
- The use of new technologies.
Worryingly, recall of treatment decisions made during the clinic has been found to be inaccurate – not only by the person with diabetes but also by healthcare professionals (Skinner et al, 2007). This suggests that the old clinical consultation model, whereby the healthcare professional gives advice and the person with diabetes listens and acts upon it, is outmoded and ineffective (Skinner et al, 2007; Box 1). Middleton et al (2006) even found that the purpose of the consultation was often unclear to both parties.
The Diabetes Information Jigsaw report (Association of the British Pharmaceutical Industry [ABPI] et al, 2006) established that 58% of people diagnosed with diabetes do not know what the diagnosis means, and over a third do not know what questions to ask those who provide their care. In addition, it revealed that 60% of people with the condition do not understand what different medicines are available, and many do not understand what their healthcare professional is telling them or the language in which the literature is written. This can lead to feelings of frustration, depression and helplessness for the person with diabetes. The report found that only 17% of people with diabetes receive information about their diabetes treatment every time they are given a prescription.
Standard 3 of the NSF for diabetes (DH, 2001) states that:
“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.”
The components of this care plan or personal diabetes record were outlined in the NSF delivery strategy (DH, 2003). A personal diabetes record includes an agreed care plan, comprising education and the personal goals of the person with diabetes. It sets out how a person’s diabetes is to be managed until their next review to foster greater understanding and ownership of the goals of diabetes care. It defines health, social care and education needs, how they will be met and who will be responsible, and identifies the named contact.
A care plan is at the heart of a partnership approach to care and is a central part of effective care management. The process of agreeing a care plan offers people active involvement in deciding, agreeing and owning how their diabetes will be managed. While the overall goal is a genuine partnership, the person with diabetes must feel that they are comfortable with what is proposed and that they do not have to bear more responsibility than they wish.
The Healthcare Commission (2007) found that services were falling far short of providing people with diabetes with this information. The report revealed that between 34% and 61% of people with diabetes across all PCTs had agreed a plan to manage their condition, and that between 1% and 53% of people with diabetes across all PCTs reported attending an education course on how to manage their diabetes.
The Government document Our Health, Our Care, Our Say (DH, 2006) states that:
“By 2008 we would expect everyone with both long-term health and social care needs to have an integrated care plan if they want one. By 2010 we would expect everyone with a long-term condition to be offered a care plan.”
There is a lot of work to do to achieve that aim. The “Year of Care” programme is a 3-year project, started in 2008, to investigate effective methods of empowering people with long-term conditions and supporting them to self-care. It sets out
to learn how routine care can be redesigned and commissioned to provide a personalised approach. Diabetes is in the vanguard of the programme, and practical resources and templates are available on the internet (http://tinyurl.com/mn3krw). This represents a huge cultural change both for people with long-term conditions and healthcare professionals.
The knowledge of people with diabetes about their condition tends to be poor – as evidenced by The Diabetes Information Jigsaw report (ABPI et al, 2006) – and could be improved through increased availability of structured education programmes.
NICE (2003) recommends that structured patient education be made available to all people with diabetes at the time of initial diagnosis, and then as required on an ongoing basis, based on a formal, regular assessment of need. The education should be provided by an appropriately trained multidisciplinary team to groups of people with diabetes, unless group work is considered unsuitable for an individual.
Structured education programmes should use a variety of techniques to promote active learning, engaging individuals in the process of learning and relating the content of programmes to personal experience. They should be adapted, where possible, to meet the different needs, personal choices and learning styles of people with diabetes, and should be integrated into routine care over the longer term. Four criteria need to be included in a programme to meet the NICE recommendations (DH and Diabetes UK, 2005):
- A structured, written curriculum.
- Provision of trained educators.
- Quality assurance.
- An audit process.
NICE (2003) acknowledges that the length, content and style of educational options varies greatly between services. Some of the educational programmes offered are unstructured, few have been formally evaluated, and few individuals who deliver education have been formally trained for this purpose. There are, however, several programmes that do meet the recommendations, notably DAFNE (Dose Adjustment For Normal Eating; DAFNE Study Group, 2002), DESMOND (Diabetes Education and Self Management for Ongoing and Newly Diagnosed; Davies et al, 2008) and X-PERT (Deakin et al, 2006), with many others in the pipeline.
Education provided by a healthcare professional during a short consultation where other clinical factors are assessed does not meet the NICE recommendations. If it involves a discussion between a trained healthcare professional and the person with diabetes, however, it may provide a useful stopgap. In the rushed setting of the diabetes clinic it may be difficult to adhere to good consultation skills (open questions, goal setting, listening, questioning, summarising). An example of a more inclusive approach is outlined in Box 1.
It is difficult to estimate the potential long-term cost savings that may be associated with structured education initiatives. If it is assumed that education can play a part in preventing hard outcomes in people with diabetes then a rudimentary analysis is possible (Table 1). In a review of published studies, Clark (2008) found that only duration of education and support predicted a programme’s success. The same author noted similar effects between group and individual approaches to education and included telephone and peer-support groups in effective solutions. In their assessment of the DESMOND programme, Davies et al (2008) found that although clinical parameters did not seem to improve over 12 months, psychological effects were positive.
On gauging success of patient-education models, NICE (2003) advocates the most important outcome measures as:
- HbA1c levels.
- Pre- and post-meal blood and plasma glucose levels.
- The prevention of acute episodes of hypoglycaemia and hyperglycaemia.
- A reduction in other macrovascular risk factors, such as dyslipidaemia, high blood pressure, smoking and obesity.
- Short-term quality of life, adverse events and treatment tolerance.
- Long-term effects on the incidence of diabetes complications, quality of life and mortality.
As more education programmes for people with diabetes are organised and researched, further details on effectiveness will emerge.
Medication and information prescriptions
The DH (2006), in Our Health, Our Care, Our Say, made a commitment to improving access to appropriate information for people with health or social care needs. The document outlined how, from 2008, information prescriptions (IPs) would be offered to everyone with a long-term condition or social care need, in consultation with a health or social care professional. Unfortunately, anecdotal evidence suggests that this has not been widely adopted.
IPs are a guide to relevant and reliable information sources which are designed to allow people to feel more in control of their condition and to help them maintain their independence through self-management. This includes information, for example, about conditions and treatments, care services, benefits and support groups. IPs also contain links or signposts to sources of information about local health, social care, and other services such as phone numbers and websites (DH, 2006).
Understanding the effects of medication forms an important aspect of education and self-management. Not taking medication – whether termed non-adherence or non-compliance – is costly both in terms of financial expense to the NHS, and in terms of diabetes-related complications for the person with the condition.
Cramer et al (2008) found non-compliance with cardiovascular and antidiabetes medication to be a significant problem, with around 30% of days “on therapy” not covered by medication and only 59% of patients taking medication for more than 80% of their days “on therapy” in a year. Morris (2004) supported these findings and illustrated the importance of tailoring medications to suit the individual. Cutting the number of times drugs were taken and using combination therapies were found to be effective in increasing adherence to medication.
Competency and self-management
The National Prescribing Centre (2007) has published a competency framework for shared decision-making with people with diabetes that contains valuable and practical advice on building a partnership to improve concordance with medication. The framework comprises three levels: building a relationship, managing a shared consultation, and sharing a decision. These levels focus on areas such as listening and communication, exploring the purpose of the consultation, information-sharing and knowledge, and deciding on an agreed management and monitoring strategy.
Practical examples of effective encouragement of self-care are provided in the document Care Planning in Diabetes from the Joint Department of Health and Diabetes UK Care Planning Working Group (2006). One successful element from the document involves the GP practice sending results of blood tests and investigations to the person with diabetes in advance of their clinic appointment with a letter suggesting questions they might like to discuss.
Empowerment and self-management can be achieved through individuals and healthcare professionals working together to agree plans for the future. It is a much more effective use of time for both parties in the long-run – and diabetes is a long-term condition.
Self-monitoring of blood glucose as part of self-management
This article has so far considered some of the general concepts and issues surrounding self-management. An important aspect of this, for many people, is self-monitoring of glucose levels, which is discussed in the following paragraphs. While self-monitoring encompasses more than glycaemic control alone, including aspects of diet, blood pressure, cholesterol, weight and physical activity, a full discussion of all of these is outside the remit of this article.
The following information briefly explores the main issues pertaining to self-monitoring of blood glucose (SMBG) as a practical example of self-management. For a more in-depth review of the subject, please see the consensus recommendations by Owens et al (2005; Box 2).
SMBG is an accepted tool to enable people with type 1 diabetes to control their blood glucose levels through self-adjustment of their insulin regimen (Owens et al, 2005). It is valuable too in the prevention and detection of hypoglycaemia.
People with type 2 diabetes treated with sulphonylureas or insulin may also be subject to hypoglycaemia, and SMBG may be seen as a key component of self-management in this population. However, controversy still exists regarding its effectiveness in type 2 diabetes (Owens et al, 2005). On the one hand it is seen as an expensive option with little evidence to support it; on the other it is seen as a vital tool in engaging people with diabetes in their own care. The paragraphs that follow illustrate these differences of opinion.
Martin et al (2006) found that SMBG was associated with decreased diabetes-related morbidity and all-cause mortality in people with type 2 diabetes. The association was also observed in a subgroup of participants who were not receiving insulin. The authors’ opinion was that SMBG may be associated with a healthier lifestyle and better disease management.
Peel and Lawton (2007) found that clinical uncertainty about the efficacy and role of SMBG in people with type 2 diabetes was mirrored in individuals’ accounts. People tended not to act on their self-monitoring results, in part because of a lack of education about the appropriate response to readings – a fact well recognised by healthcare professionals working with people with diabetes. The authors stressed that healthcare professionals should be explicit about whether and when such patients should self-monitor and how they should interpret and act upon the results, especially high readings. This may be seen as an argument for improved education rather than for restrictions in SMBG and is reflected in the latest guidance from NICE (2009; Box 3). The Scottish Intercollegiate Guidelines Network (SIGN) published their recommendations in 2001, with NHS Tayside Diabetes Managed Clinical Network Handbook (NHS Tayside, 2009) providing more recent advice.
Simon et al (2008), on behalf of the DiGEM (Diabetes Glycaemic Education and Monitoring) study group, found that SMBG – with or without additional training in incorporating the results into self-care – was associated with higher costs and lower quality of life in people with non-insulin treated type 2 diabetes. The authors felt SMBG was unlikely to be cost-effective in addition to standardised, usual care.
Furthermore, Farmer et al (2009), again on behalf of the DiGEM study group, found no convincing evidence to recommend routine use of SMBG by reasonably well-controlled, non-insulin-treated people with type 2 diabetes. However, the authors did consider that clinical judgement is required to identify those who would benefit, including people at high risk of hypoglycaemia, those motivated to make alterations to behaviour that lead to consistent changes in blood glucose levels, and where there is strong patient preference. The authors stated that if HbA1c levels remain >8% (>64 mmol/mol), then self-monitoring may provide motivation for medication adherence and lifestyle measures, as insulin therapy may be required in this group (Farmer et al, 2009).
A small study from Ireland comprising 96 participants in the monitoring group (O’Kane et al, 2008) is frequently quoted as a reason for restricting access to SMBG testing strips. The authors concluded that people with newly diagnosed type 2 diabetes had no beneficial effects from SMBG, but that it was associated with higher scores on a depression sub-scale. The size of the study (among other things), however, leads others to argue with its validity in the larger population (see British Medical Journal rapid responses: http://tinyurl.com/ktejb2).
Reliance on HbA1c as a marker of long-term glycaemic control is an accepted practice, but self-monitoring data and patient history should also be taken into consideration as frequent hypoglycaemic events may result in a low HbA1c level, while adversely affecting quality of life.
Effective self-management can have significant benefits for the person with diabetes if it engages them in their own care and is supported by structured education, suitable to their needs. It should encompass all areas of physical and emotional health and enable the individual with diabetes to feel a central part of the team caring for them.
Practical templates and guides are available to support the healthcare professional in adopting this care-planning approach, and Box 4 provides a case study that highlights some of the practical issues related to self-management.