It is well recognised in the field of diabetes that good glycaemic control has been proven to minimise the risk of developing microvascular complications (The Diabetes Control and Complications Trial [DCCT] Research Group, 1993; UK Prospective Diabetes Study [UKPDS] Group, 1998).
The International Society for Pediatric and Adolescent Diabetes (ISPAD; 2000) recommends that blood and urine testing equipment should be provided to young people with diabetes and frequent, accurate self-monitoring is to be encouraged to enable optimal glycaemic control. Thus, it is now standard at diagnosis of type 1 diabetes for a blood glucose meter to be provided in order for capillary blood glucose to be self-monitored. It is this tracking and understanding of diabetes and blood glucose levels that should dictate any changes to the amount of insulin administered and is therefore vital to the good management of type 1 diabetes.
The National Service Framework (NSF) for diabetes (DoH, 2001) states in Standard 5:
‘All children and young people with diabetes will receive consistently high-quality care and they, with their families and other involved in their day-to-day care, will be supported to optimise the control of their blood glucose and their physical, psychological, intellectual, educational and social development.’
Further to this are the National Institute for Health and Clinical Excellence (NICE; 2004) guidelines for the diagnosis and management of type 1 diabetes in children, young people and adults. This document states:
‘Use frequent self-monitoring of blood (not urine) glucose… Offer [a] blood glucose monitor with memory and encourage use of a diary.’
During the adolescent years glycaemic control can become poor due to non-adherence to treatment regimens (Hentinen and Kyngas, 1992; Kyngas and Barlow, 1995; Pound et al, 1996). This places young people with diabetes at risk of developing complications, notably the development of microvascular changes and in particular retinopathy (Gill et al, 2001). It could be argued that a poor understanding of HbA1c and its link to blood glucose monitoring is leading young people to ignore what they do not understand.
Suggestions have been made that people can become disillusioned if they do not have the ability to interpret results or see the aim of monitoring (Tiley, 1992). Self-monitoring of blood glucose and understanding of HbA1c has become an integral part of the curriculum for a number of educational programmes including Dose Adjustment For Normal Eating (DAFNE; DAFNE Study Group, 2002) and the Families, Adolescents and Children’s Teamwork Study (FACTS; Wadham et al, 2005). This further supports the importance of the person with diabetes understanding their condition and the methods by which its management is measured.
Previous audit
A snapshot audit was carried out in June and July 2004 as part of one author’s (JH-H) participation in the Warwick Certificate in Diabetes Care and was designed to assess what meters young people and young adults were using, whether they were satisfied with it or not, what they did with their readings and their understanding of HbA1c. The Ipswich Diabetes Centre has a flexible approach to the transition from young person to young adult, seeing the individual’s developmental stage as an indicator of readiness rather than an age (Royal College of Paediatrics and Child Health, 2003). Therefore there is a varying age at which transition actually occurs resulting in 15 to 17-year-olds being present in both clinics. All clinics are held in the diabetes centre, albeit on different days, and the staff overlap from one to the other thus enhancing and supporting the transitional process (Scott et al, 2006).
Staff had reported concerns about a general misunderstanding among clinic attendees of what HbA1c results meant and their relationship with glycaemic control. 100 people (50 young people and 50 young adults; see Table 1) were approached and asked to complete a questionnaire (Table 2) while they waited for their appointment.
The return rate was 100% thanks to the participation of and encouragement from the Diabetes Centre reception staff. Surprisingly, 42% left question 10 unanswered despite having answered all of the other questions and of those that answered it only 11 used a phrase similar to ‘it is a long-term reading’ or ‘it is the overall blood sugar’ with the majority (47%) regarding it as ‘an average blood sugar’. Unfortunately, an average blood glucose of 10mmol/l does not equal an HbA1c of 10%. It is this misunderstanding of such a crucial measurement of glycaemic control that was of concern.
The audit was extended to assess where HbA1c information could be provided and revealed that when finger-prick blood samples were taken from the people attending clinic the laboratory staff (phlebotomist and healthcare assistant) were often asked what HbA1c was. These team members said that they found it difficult to explain as their knowledge of HbA1c was inadequate and often referred the question to the clinic nurse or said that it was an ‘overall reading’.
Furthermore, although not included in the audit, many other members of the diabetes centre team mentioned in conversation that they found HbA1c difficult to explain to any age group and understandably there was a variety of terminology and teaching techniques being used.
As an interim measure an explanation was given by the authors to the laboratory staff in simple terms; this involved using similar terminology and pictures to that which would be used in the final educational materials (but prior to their full development and agreement). After this intervention the laboratory staff felt that they understood the subject better and the information posters that were later produced reinforced the interim teaching.
Educational material development
After the audit, education from the first point of contact with a person with diabetes became even more of a priority. The style of this education was also important so that people of all ages and cognitive abilities could understand the basic principle of HbA1c.
Andragogy
Adults are assumed to need to know why they are learning something and are goal orientated (Cranton, 1992); people need to know how HbA1c relates to their blood glucose in order for it to be relevant to them. It was thought that a visual comparison between the two readings could highlight the difference between them and hopefully a need to learn more.
Pedagogy
Pedagogy involves a teacher making the decisions about what will be learned and when: in other words it is teacher-directed (Conner, 1997). To some extent, this was the predominant approach for the new Ipswich education scheme as the content was decided by the nursing and medical team.
A display was designed and produced using ideas discussed by the authors and their colleagues. It comprises three sheets of laminated A4 paper and had three styles designed to appeal across all age groups. The aim was to provide information using minimal text, which is reported to guide patient behaviour when remembered properly (Hornke, 1983). The draft copies were circulated to all staff involved for their comments. Once the few alterations were made the final copies were printed in colour and laminated. In display order, the first was a large print, simple language explanation of HbA1c (Figure 1), the second was a numerical comparison between HbA1c and average blood glucose levels with pictorial support (Figure 2) and the third was a simplistic cartoon style picture (Figure 3) linking glucose, red blood cells and outcomes.
Implementation of education
Due to the integrated nature of the Ipswich Diabetes Centre it was decided that it would be impractical and unethical to restrict this information to specific clinics. It was felt that this information needed to be presented to every person with diabetes and its format followed the diabetes centre’s integrated ethos in that it was suited to people of all ages and aptitudes. It was agreed that the information would be used in every clinic for every age group.
Positioning the display correctly was critical so that everyone undergoing an HbA1c measurement would have the opportunity to read and understand the information. By sitting in the chair where finger-prick blood samples are taken it was possible to assess where a person’s eye would naturally fall during this procedure. The display was then placed in this location.
While each healthcare professional has their own style of teaching it was essential that the core information remain the same. Copies were reduced to fit all three educational materials on a single piece of A4 paper and placed in each consulting room. Handouts containing the same information were used in teaching sessions for practice nurses: these were later taken away and are now used in general practice. Copies were left in the Diabetes Centre waiting areas and supplied for use in the antenatal clinic where women with gestational diabetes and existing diabetes are seen.
The posters were also included in the information pack provided as part of the Ipswich diabetes centre personal record pilot scheme and were supported by a chart used by patients to record their HbA1c readings (Figure 4). The personal record scheme was developed in-house to help people with diabetes to track their blood glucose and HbA1c levels. It was piloted among 25 people with type 1 or type 2 diabetes from children to the elderly but was never audited due to funding withdrawal. Since the PCT reorganisation the personal record has been presented to the new PCT project manager and was warmly received. It has subsequently been discussed by the PCT and the diabetes network user group and they have commenced designing a personal record which will include the HbA1c information and chart from the pilot record.
Results
The HbA1c education posters have not yet been audited (we have recently experienced DSN post cuts) but the early indications are that they are very effective: within a few weeks the laboratory staff fed back that people of all ages were commenting on how they now understood what HbA1c was. Additionally, where the laboratory staff had previously felt their knowledge was insufficient they now felt confident in sharing their understanding with people with diabetes.
The format was well received as staff felt confident in using it as a simple educational tool and people with diabetes find it easy to understand. The nursing and medical staff are glad to have a useful visual aid for explaining a complicated subject to an audience of varying aptitudes. The most significant result is that everyone in the diabetes centre is now passing on consistent information about HbA1c and its relationship to day-to-day blood glucose levels.
Conclusion
Good glycaemic control should be one of the main aims of people with diabetes and a large proportion of diabetes service provision promotes this. The method by which glycaemic control is assessed (HbA1c) eluded most people involved in an earlier audit in the Ipswich Diabetes Centre and could be indicative of the larger population. In the past, people with diabetes have been shown a numerical HbA1c percentage which they equated to average blood glucose in mmol/l, however, as demonstrated by Figure 2, this is not accurate. By helping people with diabetes to understand the link between blood glucose and HbA1c, motivation to improve personal glycaemic control may increase.
Furthermore, it has been suggested that people will only change their behavioural pattern to achieve new goals if they perceive them to be attainable (Day, 2000). Individuals with an improved knowledge of their HbA1c would be in a stronger position to be able to negotiate a goal that they see as attainable.
The NSF for diabetes refers to HbA1c throughout and bases standards and recommendations around it (DoH, 2001). Thus, educating people with diabetes about HbA1c is vital and educational strategies such as that discussed in this article must continue so that self-management becomes a real possibility for people with diabetes. While an HbA1c of less than 7.4% may not be the biggest concern for most people with diabetes it remains a fact that a lower HbA1c reduces the chances of further complications (DCCT, 1993, UKPDS; 1998) and therefore cannot be forgotten and must be promoted.
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30 Aug 2024