Waiting for diabetes: Perceptions of people with pre-diabetes:

A qualitative study

Jacqui Troughton a,*, Janet Jarvis a, Chas Skinner b, Noelle Robertson c,Kamlesh Khunti c, Melanie Davies c

a University Hospitals of Leicester NHS Trust, United Kingdomb University of Woolongong, Australia

c University of Leicester, United Kingdom

Received 30 August 2007; received in revised form 27 December 2007; accepted 28 January 2008

Abstract

Objectives: This study sought to inform the development of an educational intervention for people with pre-diabetes in the UK by ascertaining

individuals’ experience of screening and diagnosis, their appraisal of the condition, and experience of health service delivery from diagnosis to 1

year post-diagnosis.

Methods: Qualitative interviews directed by framework methodology. Fifteen people diagnosed with pre-diabetes from the community (Midlands,

UK) as part of a screening programme.

Results: Respondents consistently expressed the need for education and support at diagnosis. Dominating all respondents’ narratives was the

theme of ‘uncertainty’, which linked to two further themes of seriousness and taking action. These themes were influenced by respondents’ prior

experience and appraisal of both diabetes and pre-diabetes and their interpretation of health professionals’ attitudes and actions towards them.

Conclusions: Patients identified as having pre-diabetes currently emphasise their uncertainties about their diagnosis, its physical consequences

and subsequent management. Interventions to enable the increasing numbers of individuals with pre-diabetes to manage their health optimally

should evolve to address these uncertainties.

Practice implications: Those delivering services to those at risk of, or diagnosed with, pre-diabetes should be aware of patient needs and tailor care

to support and shape perceptions to enhance health-maintaining behaviours.

# 2008 Elsevier Ireland Ltd. All rights reserved.

www.elsevier.com/locate/pateducou

Patient Education and Counseling 72 (2008) 88–93

Keywords: Pre-diabetes; Illness appraisals; Educational intervention; United K

ingdom; Qualitative

1. Introduction

Primary care studies [1,2] have shown that screening for

type 2 diabetes in the UK will identify a large number of people

with glucose levels above normal but below the recognised

threshold for diabetes; impaired fasting glucose (IFG) and

impaired glucose tolerance (IGT), collectively known as pre-

diabetes. These people have an increased risk of developing

type 2 diabetes, cardiovascular disease, and death [3–8]; costly

both to individuals and society [9,10]. There are currently no

* Corresponding author at: Diabetes Research, Level 1, Victoria Building,

University Hospitals of Leicester NHS Trust, Leicester Royal Infirmary,

Infirmary Square, Leicester LE1 5WW, United Kingdom.

Tel.: +44 116 2047819; fax: +44 116 2947819.

E-mail address: Jacqui.troughton@uhl-tr.nhs.uk (J. Troughton).

0738-3991/$ – see front matter # 2008 Elsevier Ireland Ltd. All rights reserved.

doi:10.1016/j.pec.2008.01.026

national recommendations on how best to manage this group of

patients in the UK.

There is now compelling evidence from randomised

controlled trials that in obese people with impaired glucose

tolerance, the transition to type 2 diabetes can be substantially

reduced by increasing physical activity, modest weight loss,

and to a lesser extent by pharmacological interventions [11,12].

These successful lifestyle interventions have included

individualised, tailored, long-term interactions with a facil-

itator; dietary and physical activity goal setting; and behaviour

modification. Of interest, a follow up to the Finnish Diabetes

Prevention Study [13] revealed that sustained lifestyle changes

and reductions in diabetes incidence continued even after the

intervention ceased.

Similar benefits of lifestyle interventions have yet to be

replicated or observed in UK populations [14–16]. Previously

interventions may have failed to consider adequately,

Table 1

Topic guide

Outline topic areas were:

Experience of being given a diagnosis of pre-diabetes

Attitudes and beliefs about pre-diabetes

Educational needs of people with pre-diabetes

Attitudes and beliefs about lifestyle change

Levers and barriers for participants to lifestyle changes

Preparation for managing their pre-diabetes

J. Troughton et al. / Patient Education and Counseling 72 (2008) 88–93 89

professional and patient knowledge and beliefs about impaired

glucose tolerance [17].

There is an increasing prevalence of pre-diabetes in the UK,

but an absence of evidence of interventions to address this.

Therefore there is an urgent need to develop such interventions.

These must be evidence-based, targeted to needs and easily

integrated into healthcare systems. In order to do this in a UK

population, it is important to draw on the experiences of the

people for whom the service is to be designed [18].

Recommendations for design and evaluation of a complex

intervention for an RCT [19], suggests preliminary use of

qualitative methods to identify relevant components of an

intervention, and to highlight potential barriers to its

implementation.

Currently there is little data on how individuals, identified and

given a diagnosis of pre-diabetes, view their condition. To inform

the development of an information toolkit, the WAKEUP study

[20], used qualitative methodology within an action research

framework. Key informant focus groups of healthcare profes-

sionals, diabetes specialists and patient advisors, identified key

messages about pre-diabetes for the toolkit. They felt that pre-

diabetes was serious with high risk of developing diabetes and

heart disease and these risks were preventable with lifestyle

changes. A recent qualitative study [21] examining patients’

experiences of being screened for type 2 diabetes noted those

diagnosed with pre-diabetes, lacked understanding of the

meaning and implications of the condition.

If the condition is considered innocuous, it is questionable

whether individuals will either access health services or make

lifestyle changes required to prevent future complications.

Therefore, to inform the development of an effective

educational intervention for people with pre-diabetes in the

UK, this study sought to ascertain individuals’ experience of

screening and diagnosis, their appraisal of the condition, and

experience of health service delivery from diagnosis to 1 year

post-diagnosis.

2. Methods

2.1. Design

A framework approach was employed both to organise and

analyse the data [22] and was selected because it permitted a

realist-based analysis of data content in respect of the research

question being explored. It enabled a focus on respondents’

interpretation and appraisal of the process of diagnosis

assuming that responses represented real experiences and

beliefs. It afforded rigorous structure and a step-wise approach

addressing specific information needs within a relatively

circumscribed timescale.

2.2. Sample

Sampling of participants was done from an existing database

in Leicestershire, UK, of those previously diagnosed with pre-

diabetes as part of an existing diabetes screening programme.

Through this programme people who were ‘at risk’ of diabetes

and aged 25–75 years (40–75 if White European) were screened

using an oral glucose tolerance test. Participants had one or

more of the following risk factors for diabetes: a BMI > 30 kg/

m2, family history of diabetes, history of gestational diabetes or

history of cardiovascular disease. Those on the database had

been informed of their diagnosis of pre-diabetes by letter and

supplied with a pre-diabetes information booklet. The database

held details of 136 people with pre-diabetes. This cohort were

47.1% male, 52.9% female, 55.4% White European and 40.1%

South Asian with an average age of 56.8 years (S.D. 11.2).

Following ethical approval, letters of invitation and study

information were sent to a quasi-random sample of 50 people

eligible for the study. This was achieved by selecting the first,

and thereafter, the third and fifth consecutive person until a

quota of 50 was reached. The register was ordered according to

date of screening. Prospective participants were not excluded if

English was not a first language. JT contacted patients who had

expressed a wish to participate to re-iterate the purpose of the

study and organise a mutually convenient interview time and

location (home or Diabetes Centre). Informed consent was

obtained before the interview.

Of the initial 17 positive respondents, two subsequently

withdrew; one due to work commitments, and the other having

realised that the study was not an invitation for a repeat test.

Both of these were male and Asian. The remaining 15

participants had been diagnosed between 6 and 9 months. 53%

were male, 47% were female, 60% were White European and

40% were South Asian with an average age of 59.6 years (S.D.

11.7) making this sample representative of the initial screened

cohort diagnosed with pre-diabetes. Thirteen patients were

diagnosed with IGT and two with IFG.

2.3. Data collection

Data were collected through one-to-one, semi-structured

interviews. All interviews were undertaken and tape-recorded

by JT, with interviews being transcribed verbatim, after

development of a topic guide (Table 1) and two pilot

interviews. Interviews lasted between 30 and 45 min and were

conducted during a 6-week period between November and

December 2005.

Each interview was opened with a priming question, ‘‘What

was your experience of diagnosis?’’ permitting respondents to

describe their experiences in their own way. As the study was

also focusing on respondents’ experience of the context in

which diagnosis occurred, questions alluding to that theme

were included unless this was spontaneously volunteered. To

J. Troughton et al. / Patient Education and Counseling 72 (2008) 88–9390

ensure that the interviews were reflexive, encompassing breadth

and depth of information, later interviews were informed by

preceding emergent themes to confirm or clarify findings.

There was consensus agreement after the 15 interviews were

conducted that no new information was being gleaned therefore

there was no need to recruit further participants and conduct

further interviews.

2.4. Data analysis

Consistent with framework methodology, analysis was not

rigidly iterative within data collection. All interviews were

coded using the QSR n6 (NUD � IST) qualitative data-

indexing package (Version 6) with two of the research team (JT

and JJ) identifying an initial thematic framework. From this

initial analysis these researchers, considering data indepen-

dently, identified super ordinate themes and enhanced

validation of the work with another researcher (NR) also

coding a third of the transcripts. Having identified super

ordinate themes: perceived seriousness of pre-diabetes and

taking action, framework charts [23] were used to aid more

detailed thematic analysis with diagrams evolved for sub-

themes. This enabled researchers to consider, both descriptively

and diagrammatically, connections and relationships within the

data. A sub-sample of participants (n = 6) attended an optional

feedback session to validate and enhance the credibility of the

findings. All participants strongly agreed that the findings were

a true representation of their opinions.

3. Findings

The data presented herein are used to illustrate the most

pertinent themes articulated by the respondents with the

construct of ‘uncertainty’ dominating all narratives; uncertainty

about the seriousness of pre-diabetes and uncertainty about

taking action.

3.1. Seriousness of pre-diabetes

Uncertainty about the seriousness of pre-diabetes was a

strong theme throughout all of the interviews. These views were

influenced by a variety of factors; prior experience of diabetes

and pre-diabetes, knowledge of pre-diabetes, receiving the

results, perceptions of responsibilities, lack of planned follow

up and healthcare professional beliefs.

3.1.1. Prior experience of diabetes and pre-diabetes

No participant had any experience of pre-diabetes prior to

his or her own diagnosis; N10 reflecting, ‘‘I’ve never heard of

this Pre Diabetes stuff ’’. However all (n = 15) participants had

experience of friends or family members with diabetes.

Diabetes was considered to be serious with issues such as

injections, hypoglycaemia and a loss of independence as

commonly cited fears. These concerns were often explicitly

related to the participant’s perception that those close to them

had experienced adverse consequences from diabetes. Parti-

cipant N11 notes ‘‘You can go into comas if your blood goes

down and then you’ve got to have some sort of substance to

boost you and get you on the right road. I would hate to think

that I had to shove insulin injections in me every day’’.

3.1.2. Knowledge vacuum

For all participants, lack of knowledge about pre-diabetes

created a vacuum and made it difficult for them to evaluate the

meaning and seriousness of their diagnosis. For example N11,

‘‘the letter had the tests they did, with the results. . . not that I

really understood them’’.

3.1.2.1. Identity. For most (n = 10), pre-diabetes was seen as a

grey area, which led to uncertainty about the meaning of pre-

diabetes, and the seriousness of the condition. For example, N1

observed, ‘‘Either you have diabetes or you think you haven’t,

so this pre-diabetes is not something I have met. . . so it leaves

you in ‘no mans land ‘‘and N4 ‘‘I am borderline diabetic, I’m in

that grey area, not quite diabetic but I could be’’.

For many (n = 8) identifying that they had a diagnosis of pre-

diabetes was made more difficult and confusing by being free of

symptoms. For example N2 reflected, ‘‘You’re not suffering any

physical symptoms that you would say I really need to see the

doctor right now’’.

3.1.2.2. Causes. Although most (n = 13) participants could

give reasons why a person might develop pre-diabetes, many

(n = 8) participants struggled to see why it had affected them;

for example, N13 exclaiming, ‘‘I can’t really see that I have got,

that I am Pre Diabetic, because I am not a great sugary lover’’.

3.1.2.3. Consequences. Most (n = 10) respondents were

unclear how risk applied to them and how such a diagnosis

had been made. N13 noting: ‘‘I don’t know what they found to

make them think I am at risk in the future. . . what would make

them believe that I will develop diabetes. I don’t know why?’’.

For many (n = 8) it was important to be able to understand how

the risk had been determined. N11 noting ‘‘everyone is at risk,

knowing why you are at risk is really important’’.

The uncertainty of the future was a concern for many

(n = 11) but was talked about more often by all those of South

Asian origin (n = 4), N6 reflecting, ‘‘I don’t know how bad it is

going to affect me, I don’t know what is going to happen, it has

really changed my future’’.

There was a wide range of opinion if and when diabetes

might develop, N5 suggesting that ‘‘you might get diabetes but

then again you might not’’ and N10 concerned that ‘‘all of a

sudden you could be dead’’.

3.1.3. Receiving the results

The longer the results letter took to come; the diagnosis was

viewed as less serious. For example N3 noted, ‘‘When you don’t

get that call in a day or two, you think, well it can’t be all that

bad’’.

3.1.4. Whose responsibility?

Once the results letters had been received some (n = 5)

participants felt that it was the GPs responsibility to contact

J. Troughton et al. / Patient Education and Counseling 72 (2008) 88–93 91

them and when they were not contacted, this enhanced the view

that pre-diabetes was not serious. For example N12 said, ‘‘If I

was really at risk they would have called me’’ and N13 ‘‘I just

assumed everything was fine and that is why they didn’t send for

me’’.

3.1.5. Health care professional beliefs

For those that did contact a professional (n = 4), the

perceived professional’s behaviour and comments clearly

influenced how the respondent viewed the gravity of their

condition. For example N2 noted that ‘‘when the GP said this

was serious, then I knew it’s not funny or to treat lightly’’ and

N9 ‘‘I mentioned it to my doctor and he said ‘there’s really

nothing to worry about’’.

3.2. Taking action

During the interviews all participants (n = 15) reflected on

their diagnosis and how they dealt with it. Whether to act on the

diagnosis of pre-diabetes or not was influenced by many

factors; uncertainty about preventative action, lack of planned

follow up, written information and support.

3.2.1. Uncertainty about preventative action

Most respondents (n = 10) expressed concerns about how to

take preventative action and were uncertain what to do. N7

shared a wish to act but was uncertain how to: ‘‘I want to

prevent it if I can, and I don’t know how. I am up in the air and

hoping’’. This lack of knowledge was, for some, accompanied

by explicit cost–benefit analyses and a concern around

legitimacy of lifestyle change, its magnitude and efficacy.

N1 stated ‘‘I am a scientist, I’d like some percentages. . . that if

you were ultra good, had the perfect diet, exercised the

recommended amount, that it would take you out of the danger

zone’’.

3.2.2. Lack of planned follow up

Most (n = 12) were disappointed by the lack of planned

follow up, N12 reflecting, ‘‘I feel left in mid air to fend for

myself ’’. A common consequence of lack of knowledge and

uncertainly about the seriousness of pre-diabetes, was overt

distress, which appeared more pronounced if a plan for

subsequent re-screening and follow up was unclear. N2 angrily

said ‘‘You’ve got me so far down the path and left me, and I have

a number of paths to choose now. I don’t know which one to

choose and I might just walk back. It is not satisfactory to

screen people and not follow them up properly’’. N15 angrily

suggested ‘‘if I were a horse you would have checked me up, it

doesn’t take many minutes’’.

3.2.3. What more can I do?

A few (n = 2) respondents (both Asian) passively sought

solution in medication, N5 requesting ‘‘tablets available for

pre-diabetes, to prolong it’’. Some (n = 5) respondents believed

that they were already judicious in their self-care that they

already had made reasonable lifestyle changes and did not

understand what further changes they could make. N12

reflected that ‘‘I know all these things and I’ve been doing

these things. . . so what else do you want me to do’’.

3.2.4. Written information

Although the respondents had all been issued with an

information booklet about pre-diabetes upon diagnosis it was

felt by most (n = 12) not to be useful, N12 indicating that ‘‘I just

had a basic booklet. . . it didn’t help to be honest’’, N2 ‘‘the

information was too vague’’, and N5 ‘‘it was just the same for

everybody’’.

3.2.5. Support

All (n = 15) participants would have liked to have been seen

a healthcare professional shortly after diagnosis, N10 ‘‘the

letter did explain it, but I think if somebody actually called you

in and said we’ve just had these results, and this is what you

need to do, and why you need to do it; it would have helped’’.

Throughout interviews were pleas for support to deal with

the diagnosis, and more particularly the consequences of

anxieties and behaviour change. Most participants (n = 12)

reported discussing their diagnosis with friends and family who

themselves had diabetes, perceiving this to be a valuable source

of factual material. N4 indicated that ‘‘my friend’s mum has

helped me a lot because she is diabetic so she says ‘oh you

shouldn’t eat that it’s got too much sugar. . . or these are the

best biscuits for diabetics’’.

Respondents also noted the need for consistent information

and coherent support from their health providers. N2 disclosed

anger and confusion when faced with inconsistent information,

‘‘the GP said sort of stick to unrefined carbohydrates and I said

‘what are unrefined carbohydrates’ and he said go and see the

practice nurse’. What got to me was that she said absolutely no

carbohydrate’’. She also noted her concerns around fragmented

and non-patient centred care. ‘‘(The nurse) said to me ‘now

which gym will you be joining’ and I said ‘do I look like a gym

person’’’.

Most (n = 13) participants expressed a wish for structured

information and regular, responsive contact with a healthcare

professional to help make lifestyle changes. N15 ‘‘I want to be

told by someone who knows’’ and N4 ‘‘I want more contact with

you to keep a check on me. If you know you have a check you

tend to stick to a diet better. I find dieting really hard,’’ and N3

‘‘If they consider I am high risk through family then it gives you

confidence to think they are keeping an eye on you’’.

A few (n = 3) participants, particularly those who actively

sought information on pre-diabetes, were convinced that there

should be a specialist support service available for people with

pre-diabetes comparable to other areas of care, N2 ‘‘The only

preventative medicine that we do in this country seems to be

family planning. I think if there was a diabetic equivalent of the

family planning service that would be good’’.

Many participants (n = 7) could see the benefits of attending

group education, N4 saying that ‘‘groups can support you

more. . . having people with you that are the same way, you find

you’re not on your own fighting against things’’.

All participants placed high value on a repeat test for pre-

diabetes which would reassure them they were on the right

J. Troughton et al. / Patient Education and Counseling 72 (2008) 88–9392

tracks regarding the lifestyle changes made. N10 noted, ‘‘It lets

me know if I am doing right or am I doing wrong’’ and N5, ‘‘If

it’s creeping up, I know I have to do something more’’.

4. Discussion and conclusion

4.1. Discussion

Our study has provided insight into the condition of pre-

diabetes. Prominent in our data was the theme of uncertainty,

and our data suggests that patients engage in a significant search

for meaning, using both implicit and explicit appraisals of

behaviours to manage and reduce ambiguities. Pre-diabetes was

an unfamiliar construct to the respondents sampled, and in

attempting to understand the diagnosis and its implications

participants relied on idiosyncratic beliefs developed from

familiar and trusted resources such as family, friends and health

professionals which influenced their feelings, beliefs and

coping strategies, including the need for change and its costs

and benefits.

Our findings highlight the importance given by patients

to communication with healthcare professionals who

themselves may need to consider how they minimise

potential misunderstandings and ensure consistency of

communication and information. Of concern are patients’

often erroneous beliefs about their diagnosis, because of

flawed appraisals made in the absence of concrete

personalised information.

Psychological constructs already valuably applied in

understanding patients’ perceptions of illness beliefs

and health behaviours [23,24] stress the importance of

individuals perceived risk and perceived seriousness to

determine the likelihood of adopting preventative health

behaviours. In line with the Self-Regulation Theory [25], our

respondents worked their way through an active interpreta-

tion of their diagnosis, symptoms, causes, consequences,

subsequent management (including the need for change) and

appraising the timelines associated with the development of

diabetes.

Ensuring that patients’ ideas, concerns, expectations of their

condition and treatment are elicited and mutually understood is

a necessary first step to maximise patients’ confidence in their

own abilities to cope with their diagnosis and lifestyle changes

required [26] Therefore it is vital to ensure active engagement

in self-care and current service planning for pre-diabetes should

embrace educational interventions founded on key psycholo-

gical dimensions of appraisals, weighting of risk and

confidence to undertake change.

In terms of disease management respondents expressed a

wish for more structured and tailored support after diagnosis

with a clear pathway of ongoing support. Considering the

anticipated increase in the prevalence of pre-diabetes, service

planners may need to consider the most cost effective and

rational method of care delivery such as group educational

interventions, which were considered acceptable to our sample.

Written support alone was not valued but healthcare profes-

sional time was.

4.1.1. Strengths and weaknesses

A qualitative approach such as this has utility in developing

an evidence base where research findings are either absent or

heterogeneous. Given the limited exploration of pre-diabetes’

impact to date, this study has enabled respondents to define,

consider and communicate issues pertinent to them, uncon-

strained by extant and potentially limiting constructs implied in

a questionnaire survey.

Strengths and weakness of the study can be evaluated by

using the criteria proposed by Guba and Lincoln [27] of

credibility, transferability, dependability and confirmability.

Whilst we adopted a rigorous, iterative process (to minimise

researcher subjectivity), and grounded our approach in patient

experience, no claim is made regarding the transferability and

dependability of our findings as representing all those diagnosed

with pre-diabetes, and wider consultation is undoubtedly

required. We have attempted to provide a thick description of

methods and findings to allow the reader to make an informed

judgement about whether they can transfer these findings into

their own setting. Our study population was screen-detected as

part of an existing study and their perspectives may differ from

other patients such as those identified in routine primary care.

Although efforts were made to interview respondents at the

same time point subsequent to diagnosis there was some

variability. Given time since diagnosis respondent’s experi-

ences were reported retrospectively so that appraisals may have

been rationalised and have altered since diagnosis itself.

Our study mirrored themes from the WAKEUP [20] and

ADDITION [21] studies such as seriousness, knowledge and

risk, suggesting some confirmability. Our study goes further by

exploring issues surrounding management of pre-diabetes and

what patients would find acceptable. It also gives us valuable

information about content required for the development of

future educational programmes. The narratives from this study

reassuringly followed concepts found in current psychological

theories, highlighting the importance of underpinning future

education programmes with these models.

4.2. Conclusion

Patients identified as having pre-diabetes currently empha-

sise their uncertainties about their diagnosis, its physical

consequences and subsequent management. Interventions to

enable the increasing numbers of individuals with pre-diabetes

to manage their health optimally should evolve to address these

uncertainties. This study has provided information to allow the

first steps in developing an effective educational intervention.

Given that understanding of a condition is vital to ensure active

engagement in self-care, service planning for pre-diabetes

should embrace educational interventions founded on key

psychological dimensions of appraisals, weighting of risk and

confidence to undertake change.

4.3. Practice implications

From our findings the following points may be considered to

optimise current delivery of care:

J. Troughton et al. / Patient Education and Counseling 72 (2008) 88–93 93

� G

iving a diagnosis of pre-diabetes without planned follow up

is not recommended.

� I

ndividuals should be followed up by a healthcare profes-

sional to ensure mutual understanding, and accurate patient

appraisals about cause, consequences (including risks), and

preventative management.

� O

ngoing support and monitoring is recommended

� P

roviding written information alone is insufficient.

� G

roup education may be a good option of providing

educational support, considering limited resources.

� E

ducational interventions should be underpinned by a clear

philosophy that considers psychological and educational

theories.

� H

ealth care professionals should consider how they com-

municate issues surrounding pre-diabetes with patients to

minimise misunderstandings.

Acknowledgements

This study was funded by a University Hospitals of Leicester

NHS Trust Research Fellowship award. The funding source had

no involvement in this study.

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