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Patient Education and Counseling 72 (2008) 8893 www.elsevier.

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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 Kingdom b 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 inuenced 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 identied 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.
Keywords: Pre-diabetes; Illness appraisals; Educational intervention; United Kingdom; 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 prediabetes. These people have an increased risk of developing type 2 diabetes, cardiovascular disease, and death [38]; 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 Inrmary, Inrmary 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 facilitator; dietary and physical activity goal setting; and behaviour modication. 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 benets of lifestyle interventions have yet to be replicated or observed in UK populations [1416]. Previously interventions may have failed to consider adequately,

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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, identied 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 professionals, diabetes specialists and patient advisors, identied key messages about pre-diabetes for the toolkit. They felt that prediabetes 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 specic 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 prediabetes as part of an existing diabetes screening programme. Through this programme people who were at risk of diabetes

and aged 2575 years (4075 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 rst, and thereafter, the third and fth 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 rst 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
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

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ensure that the interviews were reexive, encompassing breadth and depth of information, later interviews were informed by preceding emergent themes to conrm or clarify ndings. 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 dataindexing 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 independently, identied super ordinate themes and enhanced validation of the work with another researcher (NR) also coding a third of the transcripts. Having identied 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 subthemes. 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 ndings. All participants strongly agreed that the ndings 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 inuenced 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 reecting, Ive 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 participants perception that those close to them had experienced adverse consequences from diabetes. Participant N11 notes You can go into comas if your blood goes

down and then youve 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 difcult 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 prediabetes, and the seriousness of the condition. For example, N1 observed, Either you have diabetes or you think you havent, so this pre-diabetes is not something I have met. . . so it leaves you in no mans land and N4 I am borderline diabetic, Im in that grey area, not quite diabetic but I could be. For many (n = 8) identifying that they had a diagnosis of prediabetes was made more difcult and confusing by being free of symptoms. For example N2 reected, Youre 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 cant 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 dont 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 dont 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 reecting, I dont know how bad it is going to affect me, I dont 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 dont get that call in a day or two, you think, well it cant 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

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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 ne and that is why they didnt send for me. 3.1.5. Health care professional beliefs For those that did contact a professional (n = 4), the perceived professionals behaviour and comments clearly inuenced how the respondent viewed the gravity of their condition. For example N2 noted that when the GP said this was serious, then I knew its not funny or to treat lightly and N9 I mentioned it to my doctor and he said theres really nothing to worry about. 3.2. Taking action During the interviews all participants (n = 15) reected on their diagnosis and how they dealt with it. Whether to act on the diagnosis of pre-diabetes or not was inuenced 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 dont know how. I am up in the air and hoping. This lack of knowledge was, for some, accompanied by explicit costbenet analyses and a concern around legitimacy of lifestyle change, its magnitude and efcacy. N1 stated I am a scientist, Id 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 reecting, 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 Youve got me so far down the path and left me, and I have a number of paths to choose now. I dont 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 doesnt 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

reected that I know all these things and Ive 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 didnt 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 weve 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 friends mum has helped me a lot because she is diabetic so she says oh you shouldnt eat that its 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 unrened carbohydrates and I said what are unrened 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 nd dieting really hard, and N3 If they consider I am high risk through family then it gives you condence 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 benets of attending group education, N4 saying that groups can support you more. . . having people with you that are the same way, you nd youre not on your own ghting against things. All participants placed high value on a repeat test for prediabetes which would reassure them they were on the right

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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 its 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 prediabetes. Prominent in our data was the theme of uncertainty, and our data suggests that patients engage in a signicant 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 inuenced their feelings, beliefs and coping strategies, including the need for change and its costs and benets. Our ndings 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 awed 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 interpretation 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 rst step to maximise patients condence 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 psychological dimensions of appraisals, weighting of risk and condence 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 professional time was.

4.1.1. Strengths and weaknesses A qualitative approach such as this has utility in developing an evidence base where research ndings are either absent or heterogeneous. Given the limited exploration of pre-diabetes impact to date, this study has enabled respondents to dene, consider and communicate issues pertinent to them, unconstrained 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 conrmability. 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 ndings 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 ndings to allow the reader to make an informed judgement about whether they can transfer these ndings 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 identied 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 respondents experiences 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 conrmability. Our study goes further by exploring issues surrounding management of pre-diabetes and what patients would nd 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 identied 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. This study has provided information to allow the rst 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 condence to undertake change. 4.3. Practice implications From our ndings the following points may be considered to optimise current delivery of care:

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 Giving a diagnosis of pre-diabetes without planned follow up is not recommended.  Individuals should be followed up by a healthcare professional to ensure mutual understanding, and accurate patient appraisals about cause, consequences (including risks), and preventative management.  Ongoing support and monitoring is recommended  Providing written information alone is insufcient.  Group education may be a good option of providing educational support, considering limited resources.  Educational interventions should be underpinned by a clear philosophy that considers psychological and educational theories.  Health care professionals should consider how they communicate 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. References
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