Type1 diabetes structured education: what are the

DIABETICMedicine DOI: 10.1111/dme.12164

Research: Care Delivery Type 1 diabetes structured education: what are the core self-management behaviours? L. Grant1, J. Lawton2, D. Hopkins3, J. Elliott4, S. Lucas5, M. Clark6, I. MacLellan7, M. Davies8, S. Heller4 and D. Cooke9 1 School of Translational Medicine, University of Manchester, Manchester, 2Population Health Sciences, University of Edinburgh, Edinburgh, 3Diabetes Centre, King’s College Hospital, London, 4University of Sheffield, Sheffield, 5Diabetes Modernisation Initiative, London, 6Department of Epidemiology and Public Health, University College London, 7DAFNE User Action Group, London, 8Clinical Psychology Department, Belfast City Hospital, Belfast and 9School of Health and Social Care, University of Surrey, Guildford, UK

Accepted 15 February 2013

Abstract Aims Study aims were to (1) describe and compare the way diabetes structured education courses have evolved in the UK, (2) identify and agree components of course curricula perceived as core across courses and (3) identify and classify self-care behaviours in order to develop a questionnaire assessment tool. Methods Structured education courses were selected through the Type 1 diabetes education network. Curricula from five courses were examined and nine educators from those courses were interviewed. Transcripts were analysed using framework analysis. Fourteen key stakeholders attended a consensus meeting, to identify and classify Type 1 diabetes self-care behaviours.

Eighty-three courses were identified. Components of course curricula perceived as core by all diabetes educators were: carbohydrate counting and insulin dose adjustment, hypoglycaemia management, group work, goal setting and empowerment, confidence and control. The broad areas of self-management behaviour identified at the consensus meeting were carbohydrate counting and awareness, insulin dose adjustment, self-monitoring of blood glucose, managing hypoglycaemia, managing equipment and injection sites; and accessing health care. Specific self-care behaviours within each area were identified.

Results

Conclusions Planned future work will develop an updated questionnaire tool to access self-care behaviours. This will enable assessment of the effectiveness of existing structured education programmes at producing desired changes in behaviour. It will also help people with diabetes and their healthcare team identify areas where additional support is needed to initiate or maintain changes in behaviour. Provision of such support may improve glycaemia and reduce diabetes-related complications and severe hypoglycaemia.

Diabet. Med. 30, 724–730 (2013)

Introduction Effective diabetes self-management is essential to reduce mortality, diabetes-related complications and improve quality of life [1]. People with diabetes undertake most care themselves, away from health settings [2]. Self-management for Type 1 diabetes has evolved from taking fixed, multiple, daily doses of insulin [3] to more complex insulin dose adjustment. This approach, incorporated into Type 1 diabetes structured education, comprises background insulin injected once or twice daily and quick-acting/bolus insulin adjusted to the carbohydrate content of the meal and is informed by results of blood glucose self-monitoring. FlexCorrespondence to: Laura Grant. E-mail: [email protected]

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ible intensive insulin therapy enables a more varied lifestyle, in terms of diet and physical activity. This model was first pioneered in the diabetes Structured Teaching and Treatment Programmes (STTP) in Dusseldorf, Germany, which demonstrated reduced risk of severe hypoglycaemia and improvements in overall metabolic control [4–6]. The Dusseldorf model was closely reflected in the UK equivalent Dose Adjustment for Normal Eating (DAFNE) course, adapted in the construction of the Bournemouth Type 1 Intensive Education (BERTIE) course and other courses in the UK. Group structured education programmes are broadly based on social learning theory [7,8]. This assumes people learn from one another via observation, imitation and modelling. Developments in social learning theory placed importance on improving confidence in people’s ability to

ª 2013 The Authors. Diabetic Medicine ª 2013 Diabetes UK

Research article

carry out specific behaviours [9]. The DAFNE randomized controlled trial transformed Type 1 diabetes management by demonstrating improvements in glycaemic control, treatment satisfaction, psychological well-being and quality of life [10]. Structured education has the potential to reduce healthcare spending on diabetes-related complications, including severe hypoglycaemia [11]. Diabetes structured education courses, based on the STTP, have been rolled out both nationally and internationally in the UK, Ireland, Australia, New Zealand, Singapore and Kuwait. In the UK, the National Service Framework (NSF) for diabetes set standards for care and made a recommendation for structured education to be available for all people with diabetes [12]. Increased delivery of diabetes structured education courses across the UK has been a direct consequence of National Service Framework implementation and the supporting National Institute for Health and Clinical Excellence (NICE) quality statement [13]. National Institute for Health and Clinical Excellence guidelines list five quality criteria for delivery of diabetes structured education: (1) structured written curriculum, (2) patient-centered philosophy, (3) trained educators, (4) quality assurance and (5) audit [14]. These criteria allow considerable flexibility, permitting courses to develop and evolve according to perceived needs of patient populations. There is little documented information about how different courses have evolved and the content of their curricula. To understand how structured education influences and improves outcome (glycaemia, quality of life, hypoglycaemia and well-being) it is vital to examine course content and identify behaviours perceived as key in influencing those outcomes. The success of diabetes structured education programmes are predicated upon behaviour change [15] that may, in turn, influence glycaemia and quality of life. If it is possible to identify the broad components of structured education programmes, it will be possible to identify the specific behaviours associated with these components so that we can develop questionnaire tools to assess these and begin to relate them to more distal outcomes such as glycaemia. A questionnaire could identify which components of behaviour change specifically lead to improvements in glycaemic control and quality of life. The aims of this study were to: 1. describe and compare the way diabetes structured education courses for Type 1 diabetes have evolved in the UK using a selection of courses that meet NICE criteria; 2. identify and agree which components of the course curricula are perceived as core across courses; 3. identify and classify Type 1 diabetes self-care behaviours in order to develop a questionnaire assessment tool.

Methods Courses were initially included based on whether they were working to fulfil the five NICE criteria for delivery of structured education and then on specific study eligibility


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criteria (Table 1). The Type 1 Diabetes Education Network (DEN) helped with course identification, as it maintains a database of current structured education programmes. Targeted internet searching was used to identify courses not listed on the Diabetes Education Network. Eighty-three courses were listed on the Diabetes Education Network database and 28 stated they fulfilled the NICE criteria. Manual internet searching identified one additional course, bringing this total to 29. The Diabetes Education Network database provided contact details for educators. Educators were contacted to request a copy of their course curriculum, auditing and quality assurance information. From December 2010 to February 2011 course educators were sent reminders requesting this information and 26 courses responded. Courses that did not fulfill study eligibility criteria were excluded and eight courses remained (Table 1). Because of practical constraints, educators from five of eight courses were selected for interview. Educators (diabetes specialist nurses and dietitians) from DAFNE and BERTIE courses were automatically invited to participate as these were based on the Dusseldorf programme and are the longest established. Bournemouth was the original centre for BERTIE courses and Kings College Hospital was one of three pilot centres for the original DAFNE programme. The three additional courses were selected using a random number generator: Structured Education in Lincolnshire Enabling Choice in Type 1 Diabetes (SELECT), Insulin Carbohydrate Education for Intensive Management of Type 1 Diabetes (ICE) and Diet and Insulin to Suit your Self (DAISY). Six diabetes specialist nurses and three dietitians were interviewed. Interviews were conducted by two researchers (MC and LG) between April and June 2011 at hospitals where the educators worked. Educators were informed about the study and consented to take part. Nine educators were interviewed from a total pool of 29 educators across the five centres. An interview topic guide provided a flexible framework for questioning (Box 1). Table 1 Eligibility criteria and courses excluded Reason for exclusion

Number

No reply Course in development Based directly on DAFNE or BERTIE withidentical material Education for both Type 1 and Type 2diabetes Course too specific, e.g. newly diagnosed Not enough information Missing data on quality assurance and audit Total excluded

3 courses 4 courses 6 courses

2 courses

2 courses 2 courses 2 courses 21 courses

BERTIE, Bournemouth Type 1 Intensive Education; DAFNE, Dose Adjustment for Normal Eating.

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Structured education for Type 1 diabetes: self-management behaviours L. Grant et al.

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Box 1 Interview topic guide summary Background to the course and how it was established Background of health professionals delivering the course How the course follows the NICE guidelines Structure of the course Trained educators Patient-centred philosophy Quality assurance Auditing Core components of the course Structure of the course and details about the curriculum

The interviewers combined open-ended questions to elicit free response alongside more focused questions relating to specific aspects of each course, such as course timetable. Interviews were audio recorded and transcribed verbatim. Framework analysis was used to identify the core components that cut across the accounts of educators from the different programmes [16]. A thematic framework was established and indexing was used to apply the framework to data. A thematic chart was created to illustrate themes. A half-day consensus meeting [17] was held to establish the core behaviours underlying Type 1 diabetes management. It was chaired by an independent facilitator and attended by a range of key stakeholders: educators delivering structured education programmes who had already been interviewed

(n = 5), people with diabetes who had graduated from those programmes (n = 4), diabetes physicians (n = 2) and social scientists (n = 3). Graduates were invited to participate by educators from courses they had attended. The facilitator asked participants to generate an individual list of the behaviours they thought were involved in Type 1 diabetes management. Participants were encouraged to focus on ‘behaviours’ rather than other factors such as emotions, support, knowledge and skills that influence diabetes selfmanagement. This list of behaviours were discussed in pairs and then in groups of four and the behaviours were written on a flip chart. Two members of each group then moved between groups, to identify and resolve differences between the behaviours identified.

Results A summary and description of the five courses included in this study are provided (Table 2). Courses were established between 1999 and 2007. Intensity of delivery varied from 5 days over 1 week (DAFNE) to a half day each week for 4 weeks (ICE). The other courses were delivered 1 day per week over 3–4 weeks. The number of participants varied from four (DAISY) to 10 (ICE). The number of centres delivering each of the courses ranged from one (ICE and

Table 2 Summary of structured education courses included in the study Course

DAFNE

BERTIE

ICE

SELECT

DAISY

Location

London: King’s College Hospital and Guy’s and St Thomas’ Hospital 2000 5 days in 1 week

Bournemouth

St Helens

Lincoln

South Tyneside

1999 1 day a week for 4 weeks 6–8

2005 Half a day a week for 4 weeks 10

2007 1 day a week for 3 weeks 6

2006 1 day a week for 4 weeks 4–5

Two diabetes specialist nurses Two dietitians

One diabetes specialist nurse One dietitian

Two diabetes specialist nurses One dietitian

Two diabetes specialist nurses One dietitian

8–9 One BERTIE, but other courses use the Bournemouth Insulin Dose Adjustment Course training to develop new courses

8 1

5–6 4

4 1

Year established Structure Participants per course Number of educators at site

Courses per year Number of centres offering course

8 (average 7.2) King’s College Hospital: five diabetes specialist nurses and three dietitians; Guy’s and St Thomas’ Hospital: four diabetes specialist nurses and two dietitians 11–12/8–9 141

BERTIE, Bournemouth Type 1 Intensive Education; DAFNE, Dose Adjustment for Normal Eating; DAISY, Diet and Insulin to Suit Yourself; ICE, Insulin Carbohydrate Education for intensive management of Type 1 diabetes; SELECT, Structured Education in Lincolnshire Enabling Choice in Type 1 diabetes.

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DAISY) to 141 (DAFNE). The courses varied in the number offered each year (4–12). All courses had a written curriculum, with learning outcomes and lesson timetables. Some courses had developed curricula for particular subgroups within the population with Type 1 diabetes. For example, ICE was one part of a group of diabetes structured education courses, Diabetes Education through Adult Learning (DEAL). The DEAL programme offers specialized courses for: people with Type 1 or Type 2 diabetes; newly diagnosed patients; patients using a pump; and participants who need additional support with managing their diabetes. Similarly, BERTIE delivers a programme for the newly diagnosed. All courses appeared to fulfil the NICE criteria. Educators from every course emphasized the importance of a patientcentred philosophy and giving participants control to make their own decisions regarding their diabetes. All five courses were delivered by at least one diabetes specialist nurse and one dietician. More established courses had more trained educators and ran parallel courses. Educators from all courses used internal observations, peer reviews, self-assessment and participant evaluations as a means of internal quality assurance. DAFNE educators were additionally externally reviewed every 3 years. BERTIE educators in Bournemouth had a formal external evaluation in January 2010. DAFNE is the only course that has been subject to evaluation published in a peer-reviewed journal (DAFNE Study Group, 2002). DAFNE and BERTIE are the only courses that are independently, externally quality assured. Thus, data comparing courses with respect to core outcomes such as HbA1c and quality of life were not available. Educators from other courses identified external quality assurance as a key area for future development. All courses audited both biomedical and psychological outcomes, at baseline and at post-course intervals; usually 6 months and 1 year. Some courses had flexibility around the length of sessions, allowing them to vary this depending on the learning objectives of the group. For example, more time could be spent on calculating carbohydrate content if people were struggling to understand. Much of the variation between courses was explained by perceived local population needs. SELECT was delivered in rural Lincolnshire and participants travel long distances to attend the course, hence it is delivered 1 day a week over 3 weeks to make travelling more manageable. ICE was delivered in the third most deprived borough in the country, where the average reading age is 12 years. Educators adapted their teaching and facilitation accordingly. ICE educators emphasized a flexible approach to course delivery, allowing participants to adapt the teaching to their lifestyle and enabling extra support for participants who were struggling. There were perceived differences in baseline knowledge about diet between regions, which influenced course development. In South Tyneside, where DAISY is delivered, greater emphasis was placed on healthy eating principles,


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whereas a dietitian from a London-based programme considered participants to be knowledgeable about health eating. Intervention components that were core across all courses were: carbohydrate counting, insulin dose adjustment, managing hypoglycaemia, group work/discussion and goal setting (see quotes in Box 2). Other components mentioned by the majority of educators were; sick-day rules, management of diabetes ketoacidosis, complications, exercise and practical sessions. Aspects of structured education that were not considered to be core components by all educators included; use of a diary to record blood tests results and carbohydrate consumption and the doctor question-and-answer session. Box 2. Quotes illustrating intervention components perceived as core across courses Carbohydrate counting and insulin dose adjustment ‘The core thing is we teach them how to count their carbohydrates and adjust their insulin to it’ (ICE) ‘The core components, I think everyone would agree… is about carbohydrate counting and insulin adjusting’ (ICE) ‘Dose adjustment is the main one’ (DAFNE) ‘…it is skills around carbohydrate counting… skills around insulin management, skills around physical activity’ (SELECT) ‘The core components would be around dose adjustment, carbohydrate counting and adjustment for exercise’ (DAFNE) Hypoglycaemia management ‘Hypoglycaemia treatment I think is absolutely vital, absolutely core’ (DAFNE) ‘I think the main area people benefit from is hypoglycaemia. I am sure that is the main area that makes life so difficult for people with Type 1 diabetes’ (BERTIE) ‘Acute complication is the core, so hypoglycaemia and hyperglycaemia, we look at both closely’ (SELECT) Group work ‘I think having the group is key, in allowing people to reflect on what they are doing and use other people’s experiences to think about themselves’ (DAFNE) ‘I think one of the biggest things is that they sit in a room with nine other people who have got Type 1 diabetes and who know how it is. They enjoy being with other people and the banter that goes on and the sharing of experiences’ (ICE) ‘Group education works so well because almost for the first time people have been able to talk about these issues and you find people haven’t talked about them before’ (BERTIE) Goal setting ‘I would say that (goal setting) is essential so that we can direct the teaching to their needs, but also to be able to measure whether they are achieving what they want rather than what we want’ (BERTIE) ‘Goal setting and deciding where they want their diabetes to be in 3 months’ time; I think they are all important’ (DAFNE) Empowerment, control and confidence ‘HbA1cs are great but it is not just that, it is about their attitude to their diabetes and how they are coping… it is more about how they feel about their diabetes, how they are managing’ (ICE) ‘I personally think that the biomedical side of things is irrelevant if, at the end of the day, that person walks in feeling that they can control their diabetes’ (SELECT) ‘I know it is a cliche, but a lot of patients use the terms, “I feel that I am in control of the diabetes, not the diabetes in control of me”. It is very refreshing to see that they actually feel that’ (DAISY) ‘I think they do feel empowered and reassured and they have got confidence to go away and do things’ (ICE) ‘I think self-management is key, and along with that would be the confidence to do it and the ability to do it’ (DAFNE)

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Educators had similar views on the challenging aspects of the courses. The calculations associated with carbohydrate counting, responding to blood glucose levels and identifying patterns in blood glucose data were all identified as complex. Whilst educators acknowledged the importance of auditing quality of life and HbA1c to measure the success of their courses, they all emphasized empowerment, confidence and control as being of equal importance (see quotes in Box 2). These concepts were regarded as essential in order to change behaviour. The consensus meeting process identified six broad areas of self-management behaviour: carbohydrate counting and awareness; insulin dose adjustment; self-monitoring of blood glucose levels; managing hypo- and hyperglycaemia; managing equipment and injection sites and accessing health care (Table 3). Table 3 also documents some of the specific selfmanagement behaviours within each of these areas. For example, within self-monitoring of blood glucose some identified behaviours included testing pre-meal, when ill and before driving.

Discussion This paper is the first to describe the evolution of diabetes structured education in the UK focusing on a representative selection of courses that are working towards fulfilling NICE criteria. It is also the first attempt to identity core intervention components and self-management behaviours. In 2011, when this study was conducted, there were 83 diabetes structured education courses listed on the Diabetes Education Network website. The increase in the number of courses reflects the successful implementation of UK health policy, although in the absence of robust evaluation there is some uncertainty about the extent to which these courses lead to improved diabetes self-management. For example, it is possible that truncated courses may be cheaper to administer but are less effective at improving biomedical outcomes. A study looking at the effectiveness of a 2.5-day intervention had no significant improvement on HbA1c or severe hypoglycaemia, but did show improvements in diabetes treatment satisfaction and patient empowerment [18]. The evolution of structured education for people living with long-term conditions is reflected in the establishment of the Quality Institute for Self-Management Education and Training (QISMET), an independent body to oversee the quality and certification of self-management courses in the UK. The five courses studied were strikingly similar in terms of their content and core teaching. Four core components were identified: carbohydrate counting and insulin dose adjustment, hypoglycaemia management, group work and goal setting. Educators identified group work as an important method allowing participants to discuss their diabetes, share experiences and learn from one another. However, it was acknowledged that education in a group setting is not ideal

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for everyone and may present a barrier to course attendance. Courses tended to differ in relation to the organizational aspects of programme delivery; for example, the time intervals between sessions and average number of participants. It is notable that four of five courses were delivered over several weeks and only one over five consecutive days. It is not currently known how differences in intensity of delivery influence glycaemia and quality of life, although research is underway to investigate this. The external quality assurance component of DAFNE does separate it from the rest as the course content will be uniform across centres, but this has resource implications. Some centres cited this as the reason why they have developed their own courses. Courses varied on more practical factors because of differences in geographic location and perceived local population needs. Educators generally agreed about which aspects of the course participants found challenging: calculating insulin doses, working out carbohydrate portions and ratios. It has been estimated that half the general, adult population may not have the numeracy skills to accurately calculate insulin dose adjustments [19]. Qualitative work has shown that

Table 3 Classification of Type 1 diabetes self-management behaviours identified during consensus meeting Broad classification of self-management behaviour Carbohydrate counting and awareness

Insulin dose adjustment

Self-monitoring of blood glucose

Managing hypoglycaemia

Managing equipment and injection sites

Accessing health care

Specific behaviours Estimating carbohydrate, weighing food, reading food labels, updating knowledge about carbohydrate Adjust quick-acting insulin according to carbohydrate content; with snacks of more than 20 g of carbohydrate; using trends in blood glucose readings to adjust long-acting insulin; taking correction doses; adjusting insulin–carb meal/snack ratios; adjusting carbohydrate or insulin in response to alcohol, exercise, travel, illness, stress Before a meal, when ill, for ketones, before driving, before bed, when stressed; carrying meter, aiming for specific targets, recording results, changing/making up results Testing blood glucose after treating a hypoglycaemia, carrying fast- and long-acting carbohydrate at all times, checking blood glucose during the night if nocturnal hypoglycaemia present Rotating injection sites; changing needles; checking medication/equipment supplies, e.g. test strips Attending clinic appointments that scan for and treat complications


Research article

some people with Type 1 diabetes describe lacking the numerical skills to adjust insulin:carbohydrate ratios and background insulin [20]. There is a need to establish a method of providing information to patients with limited numeracy and literacy skills to help them better manage their diabetes [21]. Because of the complexities, a good understanding of English is a prerequisite for attending most courses; however the principles of the courses could be applied in any culture. Ensuring minority groups and nonEnglish speakers access appropriate diabetes education is an area that needs further development and is the subject of work; for example, at King’s College Hospital The combination of intervention components rather than individual components was regarded as key to successful delivery and outcome. The components identified in this study relate directly to course curricula or content (e.g. insulin dose adjustment, self-monitoring of blood glucose). It is assumed that, if participants adopt the self-care behaviours that relate to these components, they will improve glycaemia and quality of life. Although it is less explicit in the course curricula, the beneficial effects of this intervention rely upon interpersonal processes (e.g. group dynamics, facilitator skill) that promote empowerment. Educators from all courses described the concepts of confidence, control and empowerment as key outcome of their interventions. Research in the psychotherapy literature reveals that characteristics of the therapist accounted for 8% and the therapeutic alliance 20% of the variation in outcome [22]. Assuming that these results may be generalizable to the diabetes structured education literature, it would not be unreasonable to speculate that more attention needs to be paid to the role of the facilitator and their training given the possible effect on outcome. This is not easily evaluated but the Diabetes Education Network is currently working on developing a competencies framework for diabetes educators. One third of people at the consensus meeting had diabetes and were graduates of structured education programmes. This helped to ensure all relevant perspectives were captured. However, it must be acknowledged that these course graduates may not be representative of the wider population with Type 1 diabetes. A limitation is that Diabetes Education Network website information had been uploaded voluntarily by educators and may have been out of date or inaccurate. Although eight courses met all five of the NICE criteria, educators from only five courses were interviewed and invited to attend the consensus meeting because of practical constraints. The similarity in interview responses about course content mean that the researchers are confident additional interviews with other courses would be unlikely to affect our results. Each broad area of self-management identified in this paper is associated with specific self-care behaviour(s) that can be assessed using self-report questionnaire methods. Russell Glasgow urged attribution of the same importance to


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behavioural outcomes, in diabetes, as is accorded to biological [23]. This message was reiterated in a consensus of outcomes for diabetes education conducted in Australia [24]. Existing questionnaire measures do not adequately capture diabetes self-management because they have not been updated to adequately capture key recommendations that now form part of Type 1 diabetes care [25–27]. Development of an updated questionnaire to assess diabetes self-care behaviours would add to evaluation toolkits and enable assessment of the effectiveness of existing structured education programmes at producing desired changes in behaviour. This would also allow international comparisons of course curricula. Assessment of how well people are able to carry out these behaviours can help people with diabetes and their healthcare team identify areas where additional support may be needed to maintain changes in behaviour. The long-term goal of providing this support is to improve the effectiveness of self management courses. This will improve both quality of life and metabolic outcomes, thus reducing diabetes-related complications and severe hypoglycaemia.

Funding sources

This article presents independent research commissioned by the NIHR under its Research for Patient Benefit Scheme (PBPG-1208-18232).

Competing interests

None declared.

Acknowledgements

Thank you to all the participants and healthcare professionals who gave up their time to take part in this study.

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