Research: Treatment Self-treating hypoglycaemia: a longitudinal qualitative investigation of the experiences and views of people with Type 1 diabetes

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1 Research: Treatment Self-treating hypoglycaemia: a longitudinal qualitative investigation of the experiences and views of people with Type 1 diabetes J. Lawton 1, D. Rankin 1, D. D. Cooke 2, J. Elliott 3, S. Amiel 4 and S. Heller 3 for the UK NIHR DAFNE Study Group 1 Centre for Population Health Sciences, University of Edinburgh, 2 Epidemiology and Public Health, University College London, 3 Academic Unit of Diabetes, Endocrinology and Metabolism, University of Sheffield and 4 Division of Diabetes and Nutritional Sciences, King s College London, UK Accepted 28 August 2012 DOI: /dme Abstract Aims Despite improvements in insulin therapy, hypoglycaemia remains an inevitable part of life for many people with Type 1 diabetes. Little attention has been paid to how individuals self-treat hypoglycaemia and their likes and dislikes of clinically recommended treatments. We explored participants experiences of self-treating hypoglycaemia after attending a structured education programme for people with Type 1 diabetes. Our aims were: to identify treatments that are acceptable to people with Type 1 diabetes; and to provide recommendations for promoting self-treatment in line with clinical guidelines. Methods Thirty adults with Type 1 diabetes were recruited from the Dose Adjustment for Normal Eating (DAFNE) programme in the UK. Study participants were interviewed post-course and 6 and 12 months later, enabling their experiences to be explored over time. Results Study participants described a poor knowledge of how to self-treat hypoglycaemia correctly pre-course. Postcourse, individuals often struggled to adhere to clinically recommended guidelines because of: panic, disorientation, hunger sensations and consequent difficulties ingesting fixed quantities of fast-acting carbohydrate; use of sweets to manage hypoglycaemia; reversion to habituated practices when cognitive impairment as a result of hypoglycaemia supervened; difficulties ingesting dextrose tablets; and other people s anxieties about under-treatment. Conclusions Historical experiences of hypoglycaemia and habituated practices can influence present self-treatment approaches. Professionals need to be aware of the range of difficulties individuals may experience restricting themselves to fixed quantities of fast-acting carbohydrate to manage hypoglycaemia. There may be merit in developing a more acceptable range of treatments tailored to people s own preferences, circumstances and needs. Diabet. Med. 30, (2013) Introduction Hypoglycaemia presents a major burden to people with Type 1 diabetes and society and is often presented as a significant barrier to achieving tight glycaemic control [1]. It is defined biochemically by a cut-off blood glucose level between 3.5 and 3.9 mmol l [2]. Clinically, hypoglycaemia may be accompanied by various distressing symptoms and signs, ranging from anxiety, palpitations, tremor, sweating, hunger and paresthesias, through to cognitive dysfunction, seizures and coma [3]. The goal of treatment is to enable low blood glucose concentrations to rise in Correspondence to: Julia Lawton. j.lawton@ed.ac.uk a fast and safe manner, while avoiding over-treatment and resulting rebound hyperglycaemia and weight gain. In the case of mild episodes, people can, by definition, recognize their own state and take action themselves to restore blood glucose concentrations to normal. In severe cases, individuals may experience disabling neurologic impairment, coma or seizure, and a third-party intervention is required, usually using glucagon or intravenous dextrose. Although there is variation in clinical guidelines for self-treating mild hypoglycaemia, people are normally advised to ingest g of fast rapid-acting carbohydrate [4,5], with additional more complex carbohydrate to sustain glucose concentrations if a meal is not about to be eaten. While, historically, increased risk of hypoglycaemia was seen as an inevitable outcome of tight glycaemic control [6,7], Diabetic Medicine ª 2012 Diabetes UK 209

2 Self-treating hypoglycaemia: a qualitative investigation J. Lawton et al. improvements in insulin therapy, involving use of more flexible regimens with better physiological insulin profiles [6], now mean it is possible to improve glucose control without an increase (and often with a decrease) in severe hypoglycaemia [8,9]. This is particularly so if patients are provided with structured training in the skills to use insulin safely [8 10]. However, even with treatment improvements, the limitations of exogenous insulin delivery mean that intermittent hypoglycaemia remains an inevitable part of life for people with Type 1 diabetes, with those achieving good blood control expected to have approximately two mild episodes per week [3]. A growing body of work has looked at patients experiences of hypoglycaemia. This research has tended to focus on the emotional impact on the individual [11 14] and has demonstrated that experiences of hypoglycaemia can undermine confidence, lead to fear of future hypoglycaemia [15], be detrimental to quality of life [16]; and can result in individuals deliberately elevating blood glucose levels [e.g , 17]. Much less attention has been paid to people s experiences of, and views about, self-treating mild hypoglycaemia; their likes and dislikes of the treatments they have been advised to follow; and their reasons for adhering or not adhering to clinical recommendations. In this paper, we report findings from a longitudinal, qualitative study involving people who took part in the Dose Adjustment for Normal Eating (DAFNE) Programme in the UK. DAFNE is a quality-assured structured education programme for people with Type 1 diabetes [18], based on an approach first developed in the Diabetes Treatment and Teaching programme in Germany [19]. Course participants are taught how to use a flexible intensive insulin regimen comprising long-acting basal insulin injected once or twice daily, and quick-acting bolus insulin, which they adjust to carbohydrate intake at meals. During the programme, they are also given comprehensive instruction on how to self-treat hypoglycaemia (see Box 1). As part of a broader investigation of participants information and support needs after attending DAFNE [20 24], we explored their experiences of, and views about, self-managing hypoglycaemia; and their reasons for following not following course (i.e. clinical) recommendations. Our aim was to identify treatments that are acceptable to people with Type 1 diabetes and provide recommendations for promoting self-treatment in line with clinical recommendations. In this paper, we focus on the self-management of mild hypoglycaemia, as severe episodes require a third-party intervention and raise very different issues. Subjects and methods Box 1 DAFNE-recommended approaches to self-managing hypoglycaemia Hypoglycaemia is defined as a blood glucose level below 3.5 mmol l on the DAFNE programme In keeping with current clinical recommendations, the DAFNE programme recommends g of rapid-acting carbohydrate equivalent to: ml LucozadeÒ ml cola or fruit juice 5 glucose tablets; or 4 7 jelly babies*; or 8 10 jelly beans* *In the UK, jelly babies and jelly beans vary in size according to the brand; hence, there are variations in the recommended intake according to the size brand Patients are advised that, if symptoms have not improved or their blood glucose level has not risen above 3.5 mmol l after 10 min, they should take another g of rapid-acting carbohydrate As detailed elsewhere [22], study participants were interviewed on course completion (R1) and 6 months (R2) and 12 months (R3) later. This design enabled individuals experiences to be tracked and compared over time, and the factors and considerations informing their approaches to treating mild hypoglycaemia to be identified and explored, including reasons for changing their management approach over time. Sample and data collection Thirty adults with Type 1 diabetes were recruited from six DAFNE courses, hosted in five UK centres, using an opt-in procedure. Purposive sampling took place on the last two courses to ensure diversity of age, gender, occupation and years since diagnosis in the final sample (see Table 1). Recruitment and baseline interviews were staggered to allow concurrent data collection and analysis, in line with an inductive approach informed by the principles of Grounded Theory research [25,26]. Recruitment stopped when no new findings emerged from the interviews. Interviews took place between July 2008 and February Initial, post-course interviews were normally conducted in study participants homes, with follow-ups undertaken by telephone. To maximize continuity and facilitate rapport with study participants, one experienced interviewer (DR) collected Table 1 Demographic characteristics and glycaemic indicators of study participants Age (years) ; range Gender (%) 53.3% female Diabetes duration ; range 1 45 at baseline (years) Occupation (% at baseline) Professional 30 Semi-skilled 36.7 Unskilled 20 Student 10 Unemployed 3.3 HbA 1c (mmol mol; %) Baseline 73 20, range ; , range months 66 22, range ; , range Diabetic Medicine ª 2012 Diabetes UK

3 Research article Box 2 Areas explored in the topic guide History of diabetes, experiences of hypoglycaemia and approaches to self-treating episodes of hypoglycaemia pre-course Views about the hypoglycaemia management approach taught on the course Likes and dislikes of the different treatments recommended on the course Experiences of hypoglycaemia and self-management approaches used post-course Reasons for maintaining or changing self-management approaches post-course and over time Recommendations for future treatments; and unmet information and support needs To contextualize patients accounts, interviews also explored their work and family lives, historical experiences and personal circumstances all of the data. Interviews were informed by topic guides, parts of which were tailored to each study participant to enable follow-up of specific issues raised in earlier interviews. Relevant areas explored are outlined in Box 2. Interviews averaged 1 h, were digitally recorded (with consent) and transcribed in full for in-depth analysis. Data analysis A thematic analysis was undertaken by two experienced qualitative researchers. Each person s three rounds of interviews were read sequentially to identify continuities and changes in their approaches to self-managing hypoglycaemia, and the reasons for these. Individuals accounts were also cross-compared using the constant comparative method [26], to identify issues and experiences that cut across different accounts. A coding framework was developed to capture key themes, and each theme was subjected to further, in-depth analysis to identify sub-themes. Throughout the analytical process, JL and DR analysed the data independently and wrote separate reports before attending meetings to compare interpretations and reach agreement on key themes and findings. A qualitative software package (QSR-N6, QSR International, Doncaster, Victoria, Australia), was used to facilitate data coding retrieval. Below, data are tagged with study participants interview round [e.g. R2 refers to a second round (i.e. 6-month) interview]. Pseudonyms are used throughout. The National Research Ethics Service: King s College Hospital Research Ethics Committee approved the study (reference: 08 H ). Results Pre-course approaches to hypoglycaemia management (R1) Most study participants described how, in light of course attendance, they now realized that, historically, they had selfmanaged hypoglycaemia incorrectly. Typically, individuals reported over-treatment whereby: whenever I did have a hypo I would just eat and eat and eat and eat until I felt better (Niall; R1); or it would be a case of heading to the fridge and getting down whatever (Chris; R1); which often resulted in later blood glucose levels which were sky high (Annette; R1). Study participants also described using the wrong kinds of foodstuffs, such as chocolate, which, as they now recognized, slows the effects of rapid-acting carbohydrate because of its fat content. Some also described having been unaware of the correct level at which hypoglycaemia should be treated. Reconfiguring practices in light of course attendance Given their historical practices of over-treatment, study participants often conveyed initial anxiety and, sometimes, disbelief about the amount of carbohydrate actually required to raise blood glucose to clinically recommended levels: it s as little as four or five jelly babies, and I found that quite unusual; it was surprising to me (Karen; R1). In most cases, the explanations and education given on their courses helped overcome initial concerns about reducing or changing the amount of carbohydrate used, such as learning about the liver s function, I found that really helpful (Hazel; R1) and what kinds of foods are effective and, why, like I realize having a chocolate bar or some milk is useless cause it takes a couple of hours for them to get into your system (Colin; R1). Accounts at 6 months (R2) and 12 months (R3) While virtually all study participants expressed a motivation to sustain the hypoglycaemia self-management approach taught on their courses, follow-up interviews revealed that only half the sample had consistently done so. Typically, these people were recently diagnosed and had been instructed to use the course-recommended approach from diagnosis. This included Fiona, diagnosed 12 months previously, who reported using a fixed quantity of dextrose tablets pre- and post-course as: that s just what I ve always used (Fiona; R3). As well as highlighting the habituated nature of their practices, individuals who sustained a clinically recommended approach also tended to describe having good hypoglycaemia awareness and, hence, the ability to pick up on and respond to symptoms in a calm, restrained and timely manner: as soon I reach about 4 [mmol l] I start feeling hypo, which is good for me because obviously I ve not been going into a low, sort of risk, area, but also because I ve got my logic head on, so I can sit there and go, OK I need 5 dextrose tablets. (Karen; R2) Other people, however, reported reverting or slipping into practices of over- or mistreatment over time. As described below, there were various interconnected reasons for this, which were often influenced by experiences of symptoms in the past and or present. 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4 Self-treating hypoglycaemia: a qualitative investigation J. Lawton et al. Panic and disorientation In contrast to Karen, some individuals reported distressing experiences of hypoglycaemia post-course and over time, such as Frances who, at 6 months, described how, recently: I was walking across the hall and my leg started going and I just remember feeling that, gripping me and feeling like, oh god not again kind of thing, like instant panic, and Jacqui who had just been on a supermarket trip where, suddenly, literally it would just come over. I d be poring with sweat and totally confused and didn t know where I was. Not only did these kinds of experiences trigger a sort of, em, panic mode, at which point, you just want to get out of the hole (Graham; R2), study participants also highlighted the difficulties of ingesting fixed quantities of carbohydrate when they felt panicked and disoriented and their treatment did not come in a bounded quantity. Some people, for instance, talked about how, once you unscrew the top of the bottle of Lucozade, it s difficult to take, just to drink a third of it, you just find yourself glugging the whole lot down (Peter; R2); and just grabbing a handful of jelly babies I don t think about measuring them out (Louise; R3). Panic and confusion could also result in individuals going into what Adam described as automatic mode and reverting to former over-treatment practices, because, as this person, who had had diabetes for 33 years explained: when you re in a hypo you re not thinking rationally. Because obviously your brain s not functioning properly, that s one of the sort of symptoms, the confusion, so it s very, very easy to go back to your old ways you know, glugging Lucozade until you re ready to burst you re not going to change those sorts of habits overnight. (Adam; R3) In some cases, study participants also described experiencing insatiable hunger sensations, which compounded their difficulties treating hypoglycaemia in a restrained manner: it s the most intense hunger you ve ever had and it s almost like you sit there and you feel like, I fancy a chocolate bar, it s like that, your sort of natural response it s kind of a real urgency to get something to eat and that doesn t subside until your levels start rising again. (Frances; R2) A chance to indulge While some people (over-)treated hypoglycaemia in response to hunger sensations, others confessed, on occasions, to using their experiences of hypoglycaemia as a licence or great excuse to eat all sorts of lovely things (Jane; R2); or, as Niall, who reported a pre-course history of carbing out, elaborated: I know that I shouldn t but, sometimes it s, it s just, eh, I ll kind of, I ll feel, I ll get the sensation of a hypo and I ll think, right I need to eat something and, it sounds silly, but sometimes it s quite nice to use the excuse of the hypo to binge out without, without thinking about it, eh, without thinking about, eh, having insulin for it. (Niall; R3) In some cases, study participants suggested that using sweets to manage hypoglycaemia made it more difficult to avoid overtreatment because, as Annette, who had recently used jelly babies explained, sweets are simply too nice and resulted in her eating too many (R2). Developing and changing treatment strategies over time To pre-empt or avoid over-treatment, some individuals reported instigating practices, sometimes recommended by course educators, of just having my four jelly babies that I line up on my bedside table (Lindsey; R2) or bundling together little bags of jelly beans all kind of counted out around the house (Hazel; R2). Chris, at 12 months, likewise, described now always carrying 100-ml cans of a cola drink around with him, which were not only more portable than bottled drinks, but also ensured he only consumed the exact amount of carbohydrate required. Portability was also a reason cited by some people for choosing to use dextrose tablets. However, by 6 or 12 months some described having abandoned this treatment as they found the tablets hard to swallow and disliked the chalky taste: I hated them, they re just disgusting and I d end up feeling sick after them, and, obviously, you had to have about, I think it was five, and after having that many you just feel sick. (Annette; R2). There were also some reports of under-treatment as a result of dextrose tablets lack of palatability: I can only manage two before I feel that s quite enough (Ruth; R3). In some cases, other people were enlisted to fetch and help ensure the correct hypo treatment was followed, with study participants describing how they had cascaded course information to family members, friends and sometimes also work colleagues, including where they kept their treatments (e.g. in a desk drawer). However, to be supported effectively, some individuals described how other people s own panic reactions and anxieties about under-treatment needed to be overcome: I wish [husband] could do the course. Em we, sometimes have words about how to treat a hypo, because... if I go hypo, he will, makes an assessment of my blood straight away, even if I say to him, I m treating it, I m treating it. Em I ll have half a bottle of lucozade he ll say to me, you need the full bottle. He prefers me to over-treat which is what I ve done for years. (Fiona; R2) Future support needs Some individuals recounted traumatic, pre-course experiences of hypoglycaemia, which had led to seizures and hospital admissions, and had sometimes endangered their lives or those of others. These experiences were described as having had a profound psychological impact, which change you from then on (Stephen; R1). Such people highlighted a need for longer-term, tailored support because: the only barriers are purely psychological (Alistair; R3). This included Paul, who developed diabetes after having had pancreatitis and who reported how, initially, he had had very bad hypos every night, like waking up being drenched, going to bed and having another hypo and that sort of just kept going on and on and they were scary, like the black, the completely blacking out ones. Despite being on a DAFNE course and observing hypoglycaemia treatments work for others, he confessed to having been unable to break his cycle of overmanagement wherein, when I sort of go down, I have, it seems to trigger a panic mode at which, I ve got to get out, 212 Diabetic Medicine ª 2012 Diabetes UK

5 Research article and there s a oh got to have sugar, and I tend to overtreat it (R3). Hence, Peter highlighted a need for a one-toone with [an educator] to deal with severe hypos effectively and I need, you know, it s more of a psychological feeling and a fear rather than a health, a medical thing. Discussion This is the first study to explore, in depth and over time, people s experiences of, and views about, self-treating hypoglycaemia using clinically recommended treatments and guidelines; in this instance, having attended the Dose Adjustment for Normal Eating (DAFNE) programme for people with Type 1 diabetes in the UK. Our study participants accounts highlighted a poor knowledge of how to treat hypoglycaemia pre-course. Post-course, some struggled to adhere to clinically recommended guidelines because of: panic, disorientation and hunger sensations, which made it difficult to ingest fixed quantities of fast-acting carbohydrate; use of sweets to manage hypoglycaemia, which were sometimes seen as too appetizing and resulted in over-treatment; reversion to habituated practices when feeling panicked and disoriented; finding dextrose tablets hard to ingest; and involvement of others who were anxious about under-treatment. A key finding is the way in which historical experiences of hypoglycaemia and habituated practices could influence present self-management approaches. As others have also suggested [6], the importance of education cannot be overstated. Not only did many study participants, especially those with longer diabetes duration, not know how to self-manage hypoglycaemia correctly prior to their courses, or the threshold at which it should be treated, they also described benefiting from clear explanations about the liver s role and why some treatments are more effective then others in terms of speed of carbohydrate absorption. (See Box 3 for questions that could be raised in an annual review or other diabetes appointment to establish which individuals may be experiencing problems with hypoglycaemia management and hence could benefit most from further education). Furthermore, given the role that other people may play in helping people with Type 1 diabetes to self-manage hypoglycaemia, benefit may accrue from also offering them education, training and support [12,27]. As individuals may Box 3 Questions to ask in a diabetes consultation In our own consultations with individuals with Type 1 diabetes, we find some specific questions useful in identifying those troubled by hypoglycaemia: 1. The number of severe hypoglycaemic episodes over the year 2. The blood glucose at which patients identify that they are low (levels below 2.5 mmol l are a concern) 3. How often their partner or other family member needs to prompt them to take action draw upon diverse support networks, including work colleagues and friends as well as family, these should be explored in consultations to ensure they brief the correct people and that, if necessary, these people can be targeted for additional information and support to overcome their own anxieties about under-treatment. Alternatively, people with diabetes may benefit from training and support in how to talk to, and support, others themselves. Education and information alone are insufficient to ensure the correct treatment approach is adopted and sustained over time [28]. Habituation is a key issue to emerge from our findings, with those with longer diabetes duration being more likely to revert to practices of over-treatment over time. This finding underscores the importance of the correct approach being taught from diagnosis to establish good habits, and this information being revisited at clinic visits. Ensuring that the clinically correct treatment is used from diagnosis may also help individuals retain hypoglycaemia awareness and, hence, avoid severe hypoglycaemic episodes that can be detrimental to later self-management practices. Our data, alongside that of others [13,29], have highlighted how previous experiences of severe hypoglycaemia can influence current (over-) treatment practices, with some study participants indicating a need for tailored, psychological support to help overcome cycles of treatment mismanagement. Research on the use of psychological interventions to reduce fear of hypoglycaemia and, hence, potentially, practices of over-treatment, remains in its infancy. However, as others have recommended, further work to develop and evaluate interventions, such as those involving cognitive behavioural therapy [15], or referral to a clinical psychologist or psychiatrist [29], might be beneficial to some people, as could research exploring better integration of diabetes and psychological medicine teams [29]. We would also recommend that historical experiences of hypoglycaemia are explored during annual review appointments and other consultations about diabetes control, to ensure vulnerable patients are identified and offered additional support. While this practice might add slightly to the length of a consultation, avoiding such a discussion could be counterproductive, as inappropriate self-management practices can become ingrained over time. While there may be psychological reasons for over-treatment, some study participants reported physical ones. These often arose from experiences of the symptoms and sensations of hypoglycaemia, such as confusion and disorientation. In some such instances, mismanagement could potentially be overcome with better treatments and or treatment delivery methods using simple behavioural techniques. For instance, to help people with Type 1 diabetes regulate treatment when in a panicked and disoriented state, it is important to ensure they access treatment that comes in fixed quantities. Hence, in line with the strategies devised by some of our study participants and or recommended by their course educators, it is worth advising the carrying of fixed quantities of sweets or small cans of a cola drink rather than larger bottles. Such treatments may Diabetic Medicine ª 2012 Diabetes UK 213

6 Self-treating hypoglycaemia: a qualitative investigation J. Lawton et al. also be liked by people with Type 1 diabetes, given our study participants preference for easily portable options. In addition, as some individuals struggled to manage hypoglycaemia with sweets, they might benefit from treatments that more closely approximate medications. Dextrose tablets are one possibility; however, given our study participants dislike of the taste and difficulties swallowing them, and the consequent potential for under-treatment, this might not always be the best option. A range of different treatment options should thus be explored with people who have Type 1 diabetes and those selected tailored to individuals preferences. We would also recommend further work to develop new treatments which could, potentially, combine the following qualities: are easily portable; are not sweets (or, at least, do not resemble sweets); come in fixed quantities; and, are easier to ingest than dextrose tablets. Cost would also need to be considered in any future treatment development. A key study strength is the longitudinal design that permitted individuals experiences and views to be tracked and compared over time. A potential limitation is the study s restriction to the UK, as some treatments currently used in this country, such as LucozadeÒ, might not be as accessible or affordable in other countries, such as those in the Third World. Also, some treatments, such a sweets containing gelatine, cannot be used by certain religious groups (e.g. Muslims). Hence, treatments for hypoglycaemia might by partly country-specific, requiring country culturally specific studies. In summary, there is value in providing clear advice on how to deal with symptomatic hypoglycaemia as part of a structured education course and, indeed, from initial diagnosis. However, some individuals, particularly those with long-standing diabetes, may struggle to follow practical guidelines because of panic and disorientation and reversion to habituated practices when cognitive impairment as a result of hypoglycaemia supervenes. Professionals need to be aware of the range of difficulties people with Type 1 diabetes may experience in restricting themselves to fixed quantities of fast-acting carbohydrate and sweets and there may be merit in developing a range of more acceptable treatments tailored to individuals circumstances, preferences and needs. Funding sources None. Competing interests SA chaired the national DAFNE Executive committee (and demitted office in 2011). The other authors have nothing to declare. References 1 Choudhury P, Amiel SA. 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