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Dilemmas and directions in the care of the diabetic teenager: the Arnold Bloom Lecture 1999

2000; Wiley; Volume: 17; Issue: 1 Linguagem: Inglês

10.1002/(sici)1528-252x(200001)17

2047-2900

R. W. Newton, A. A. Connacher, Andrew D. Morris, C. J. Thompson, Stephen Greene, Rhodri Davies,

Childhood Cancer Survivors' Quality of Life

Arnold Bloom died on 22 November 1992. He was for many of us one of the guiding lights in diabetes during the 1970s. A warm and kindly man, he had a tremendous understanding of the issues of living with diabetes. His words of encouragement were particularly appreciated in the early 1980s when in the face of much scepticism we set out with an idea that became the Youth Diabetes Project. At that time, there was a clear gap in targeted services for the care of the teenager with diabetes. Health professionals were attempting to come to terms with the special problems encountered in this age group. However, some members of the diabetes team had abandoned even attempting to understand the complexity of the problem. We had heard that a prominent diabetologist once described young people with diabetes as ‘uncommitted, impervious to instruction, cheating and defying advice’. It is important to ask whether we regard this pattern of behaviour in a teenager as normal or abnormal. We, as physicians, may have been partly responsible for creating an air of mystery and confusion about this special group of patients. In many respects, we have turned their management into an academic exercise and taken refuge in somewhat strict rules of diabetes care, rather than listening to clear messages from young people with diabetes themselves. It is likely that we have gone through a period of realisation of our misconceptions. This commentary examines some of the problem areas and introduces the views of young people with diabetes. The ability to listen and understand may provide insight into more appropriate strategies for diabetes care and future research. The problem is of course not great numerically. Prevalence data from Tayside, Scotland1, 2 suggest that most United Kingdom clinics deal with fewer than 200 teenagers with type 1 diabetes. Nonetheless, they are perceived as presenting special difficulties. The first problem for many is the marked deterioration in glycaemic control during this time. Data from our own clinic clearly demonstrate worsening of control in the late teenage years. Most worrying is the sub-group of very poorly controlled teenagers, often with a high proportion of young women, who track within the top quartile of glycated haemoglobin. This is particularly evident if we compare the 75th centiles of glycated haemoglobin (Fig. 1). Perhaps just as important is the clear evidence from our own data and from Pounder in Nottingham3 of settling of glycaemic control as these patients reach their early 20s. Mean and 75th centiles of HbA1c in 175 teenagers with diabetes in 1995 The second problem is that patients who suffer extremes of poor control, or so called ‘brittle diabetes’, are most often in their adolescent years. Robert Tattersall defined ‘brittle diabetes’ to exist in one whose ‘life is constantly disrupted by episodes of hypo or hyperglycaemia whatever their cause’4. One such patient within our own clinic was hospitalised for eight months during one year as a result of recurrent diabetic ketoacidosis. Like so many others, she encountered difficulties over vascular access and during this period had a dramatically large number of unnecessary investigations and questionable therapeutic interventions. We discovered clear evidence that she was self-puncturing tunnelled Hickman lines using an autolet stylo, and subsequently was found to be injecting presumed isophane insulin from a vial that contained almost pure distilled water5. Since Tattersall's original description, investigation by Geoff Gill and George Alberti in Newcastle and David Schade in the University of New Mexico have implicated the psycho-social/factitious nature of the ‘brittle’ diabetes problem6, 7. Nonetheless, many professionals involved in the care of the teenager with type 1 diabetes are still pre-occupied that both ‘brittle diabetes’ and ‘chronic poor control’ are problems caused by a biochemical defect and that sophisticated methods of insulin delivery are the therapeutic answer8. The results of the DCCT remind us of the impact that poor control during adolescence may have in causing complications in the longer term. Although only 18% of subjects in the study were teenagers, it is worth emphasising that the mean length of follow-up was only six years, in other words equivalent to the duration of teenage life9. Furthermore, in addition to this evidence of a direct relationship between control and overt microvascular complications, there are now data showing sub-clinical abnormalities of endothelial function during teenage diabetic life long before the development of clinical complications10. The advent of ‘pen’ injection devices and more convenient injection equipment during the 1980s led to a move to more intensified insulin regimens as a theoretical solution to poor control. Although, a number of studies have recognised the greater flexibility conferred by such devices, there are no data to suggest that changes in equipment have ameliorated the problem of glycaemic chaos during teenage years. For example, Henrik Mortenson in Denmark studied three different insulin requirements in children and teenagers over a two year period: (i) twice daily split and mixed regimen; (ii) intensified regimen using four times daily injection and (iii) twice daily insulin but changed to intensified regime during the study period. There were no differences in glycated haemoglobin between the study groups after two years; in all groups the control deteriorated and weight increased11. More blood glucose testing is likewise cited as a potential solution to our control problems. However, on ‘self-report data’ there is no evidence that blood testing leads to better glycaemic control12. Furthermore, most doctors are aware that ‘the book of blood test results can create conflict during the medical consultation process’. Many doctors sit judgementally mulling through blood test results making meaningless suggestions for changes in insulin dosage. More objective data from the DARTS database in Tayside has looked at the encashment of pharmacy scripts for blood testing strips. This suggests that over an 18 month period only 50% of the teenage group ever even obtain testing strips. Interestingly, the same applies to those patients on insulin in their 20s13. However, in those who are obtaining blood testing strips regularly there is a clear correlation between glycaemic control and frequency of testing. We must continue to take an extremely positive view of the need for home blood glucose monitoring but be mindful of the reality if we are to avoid becoming over-judgemental of those who are not testing! Increasing preoccupation with education about blood testing and self-care is not the sole answer to the problems of the teenager with diabetes. There is a danger that it is a ‘let-out’ that at least we appear to have done something professionally in circumstances where we should be looking at alternative support strategies. Jim Farquhar, formerly Professor of Paediatrics at the University of Edinburgh, died on 6 June 1998. Jim was by any standards a visionary in the care of the adolescent with type 1 diabetes. In the early 1980s when there was clear evidence of a gap in the provision of care for the teenager with diabetes and growing strife between paediatricians and adult diabetologists as to who should best care for this age group, Jim had the foresight to propose a novel model of care, which directly addressed the special needs of the adolescent with diabetes. This model still forms the framework for our approach today. In 1983 the first annual Firbush Course for Young People with Diabetes took place under the auspices of the Youth Diabetes Project14, and two years later the first Conference for Young Diabetics took place in Birmingham15. At the same time, the Scottish Study Group for the Care of the Young Diabetic was formed with the clear philosophy of collaboration between those paediatricians and adult diabetologists with an interest in the care of the young diabetic. This year will be the 18th Consecutive Firbush Young Diabetic Course by Loch Tay in Central Scotland. The original philosophy was to encourage young people with diabetes to come together to share experiences of diabetic life. At a personal level, young people were able to gain confidence to participate in outdoor activities and push themselves to the limit in a protected environment. It was believed that bonding processes and the sharing of experiences would lead to development of both social and self-management skills in diabetes. However, over the past 17 years the educational opportunity afforded not only for people with diabetes but also for professionals has become apparent. The opportunities for carers to live with people with diabetes is now fundamental to the philosophy of Firbush; for example, the opportunity to discuss the problems of living with diabetes in a protected environment and the chance to speak with young people openly has provided major clues to the reasons for control difficulties during teenage years. Young people have repeatedly challenged: ‘doctors just study us… they should listen and understand!’. Firbush has coincided with new avenues of research that have focused on psycho-social factors that are associated with poor control. These include anxiety, confidence, locus of control, depression, empowerment, education and more recently self-efficacy in problem solving16. We believe we had identified the clear behaviour patterns that appear to be important determinants of biomedical outcomes, for example, the clear association of alcohol intake as a cause of diabetic ketacidosis17 and ‘sexual abuse’ as an association with chronic poor control in the teenage girl. More fundamentally the self-care issues of ‘eating problems’, ‘abnormal injection treatment behaviour’ and ‘fear of hypoglycaemia’ are all important if we are to seek new directions for the future. Evidence from the Young Diabetes Conference in 1987 indicated that 71% of young people with type 1 diabetes ‘binge’ eat, and that this is often associated more with feelings of extreme guilt15. In addition, UK data have demonstrated clear associations between formal clinical eating disorders and type 1 diabetes in teenage girls18, which have important long term implications. More recently, Rydall and colleagues in Toronto19 demonstrated a striking association between established eating disorders in diabetes and diabetic retinopathy. Most of us who are involved in clinics for young people are aware how important dietary compliance is as a factor in poor diabetic control. Even more intriguing is the re-emergence of interest in abnormalities of gastric motility in relation to chronic hyperglycaemia. It is clear that abnormalities of gastric emptying do not necessarily imply irreversible autonomic neuropathy but may be transient in relation to hyperglycaemia20, 21. This may in turn contribute to poor control by causing mismatch of insulin action and absorption of carbohydrate. Furthermore, are our own assumptions about high prevalence of bulimia and eating disorders in our patients correct or should we question whether some recurrent vomiting and gastrointestinal symptomatology not only relates to chronic hyperglycaemia but may in turn contribute to poor control—a ‘vicious cycle’? It is important, however, to recognise that such eating abnormalities are common in the non-diabetic, and that it must be regarded as almost normal teenage behaviour. For example, data suggest 79% ‘binge’, 70% ‘consider themselves fat’ and ‘half of these will be actively dieting’, 15% ‘meet the diagnostic criteria for bulimia’ and ‘as many as 11% may induce vomiting’22, 23. Perhaps the more significant clue from discussions with young diabetic people as to the aetiology of poor diabetic control is abnormal insulin treatment behaviour. Discussions over several years have highlighted that most young people with type 1 diabetes deliberately miss insulin injections at some stage. In some cases the aim is to lose weight, but other reasons include experimentation, trial as a manipulative gesture or occasionally needle phobia. Intermittent use of insulin is much more a reality than was ever believed previously. Some indirect evidence of this came from a study performance in Dundee24, which looked at the clinical characteristics of 122 consecutive episodes of proven diabetic ketoacidosis. The young adults with diabetic ketoacidosis had significantly worse glycaemic control, much lower plasma glucose concentrations at presentation, shorter time to recommencing subcutaneous insulin following admission, fewer infections and markedly reduced duration of hospital stay. Most important, however, was the likelihood of finding a proven precipitating cause. In the vast majority of those under 25, there was no identifiable cause apart from previous high alcohol intake or the likelihood of insulin withdrawal24. From the Youth Diabetes Project, it was possible to hypothesise that, for many patients who are chronically poorly controlled, insulin is given only when the patient is symptomatically intolerably hyperglycaemic. There are long spells of missed injections and occasionally delay in intervening and responding to hyperglycaemia may precipitate a rapid progression to diabetic ketoacidosis. The DARTS Collaboration in Tayside has now provided much more direct evidence for this hypothesis25. In a study of 89 young patients with type 1 diabetes the recommended insulin dose according to the clinic was compared with the amount of insulin obtained at community pharmacies over an 18 month period. Insulin administered during hospital admission was also taken into account. An ‘adherence index’ was then calculated, which reflected the total days in insulin covered in one year. Unsurprisingly, 28% of these patients obtained less than the prescribed dose of insulin, but, more significantly, their mean deficit was 115±68 days per annum, i.e., at least a quarter of patients missed the equivalent of four months of insulin per year. There was, in addition, an inverse relationship between the adherence index and glycated haemoglobin, and 90% of patients who suffered episodes of diabetic ketoacidosis obtained insufficient insulin to account for their daily dose. Most important of all, in those patients in the top quartile of HbA1c (>10%) the main insulin coverage was significantly less than 365 days (Fig. 2). Clearly, those patients with glycated haemoglobin level in the high range are omitting insulin. If the adherence index is correlated with five year age bands in the clinic, the non-adherent group are predominantly in the 15–20 year age band (Fig. 3). Correlation of glycaemic control (HbA1c) with adherence (days of insulin supplied per annum) in 89 subjects with type 1 diabetes. •, hospital admission for diabetic ketoacidosis. Reproduced with permission from the Lancet25 Morris AD, Boyle DIR, McMahon AD, Greene SA, MacDonald TM, Newton RW. Adherence to insulin therapy, glycaemic control and ketoacidosis in insulin-dependent diabetes. Lancet 1997; 350: 2505–1510. Relationship between age, glycaemic control (lower panel) and adherence to insulin (upper panel). Reproduced with permission from the Lancet25 Morris AD, Boyle DIR, McMahon AD, Greene SA, MacDonald TM, Newton RW. Adherence to insulin therapy, glycaemic control and ketoacidosis in insulin-dependent diabetes. Lancet 1997; 350: 2505–1510. These data clearly show that omission of insulin is a major determinant of glycaemic control. It is important to consider how to use this information in our clinical practice. Does it become a further interface for conflict, accusation and judgement, or should it be more reasonably regarded as normal behaviour? It is tempting to speculate that, in the very poorly controlled group, the simplest possible insulin regime to achieve ‘cover’ would be preferable to an intensive four times daily regime. Even a single daily, ultra-long acting insulin may be appropriate for individuals who frequently omit insulin. Another key issue is that, rather than assuming that more education is essential for this group, alternative strategies of support and encouragement should be sought. Hypoglycaemia has been a significant practical problem in successive diabetes courses at Firbush. We studied the requirements and use of insulin in 81 subjects between 1993 and 1995. We recommend reduction in insulin of at least 25% on the first day of outdoor activity, which involves a hill walk with sustained exercise. During the study, there were 201 self-report grade I and II hypoglycaemic episodes in the subjects. Despite advice most participants did not have the confidence to reduce their insulin by 25%. The main reduction for day one was only 16%. The reduction to 25% on day two resulted in a significant drop to only 66 episodes; the average reduction in the daily dose of insulin by the end of the week was between 25 and 30% (Table 1). In summary, a reduction of less than 10% in the total daily dose and a large initial insulin dose were clear predictors of hypoglycaemic risk in this environment of intense unusual exercise. We believe that hypoglycaemia directly related to exercise is regarded as less of a problem by teenagers because it is predictable, occurs at the peak of insulin action and is usually less severe. In that respect, it is worth bearing in mind that sexual intercourse may be regarded as such acute exercise and data from the Youth Diabetes Conference has indicated that as many as one in six young people with diabetes have had hypoglycaemia during sexual activity15. The real fear of teenagers is delayed hypoglycaemia occurring nocturnally or early the following morning. It often occurs after sustained exercise, but the connection with exercise appears to be inconsistent and unpredictable and not always exacerbated by alcohol ingestion. Significantly, all episodes of severe hypoglycaemia which received medical intervention between 1992 and 1995 at Firbush occurred after 8 p.m. or during the night, normally following sustained exercise. The DCCT is rightly regarded as a landmark study by all health care professionals working in diabetes. In 1994, we presented the messages of the DCCT to the teenagers with diabetes in our clinic26. We devised a structured questionnaire, which invited opinion in terms of the association between good control, reduction in complications and also the increase in hypoglycaemia in the tight control group. In response to the question ‘what would worry you about keeping blood sugar levels at lower levels (4 to 7 mmol/L)’, the majority of subjects were most concerned about more numerous and more severe hypoglycaemic episodes. Half were concerned about loss of their driving licences and the majority expressed concern about possible weight gain. Furthermore, the survey demonstrated that at least 50% of patients who self-monitor are controlling at the 7–10 mmol/L level and only 20% choose to control at the 4–7 mmol/L target26. Experience from the Youth Diabetes Conference indeed confirms that as many as one in five teenagers with diabetes are ‘terrified of hypoglycaemia and adjust their insulin in order to avoid this problem’15. The traditional adult diabetes view of the paediatric ethos of care of the teenager is of a pre-occupation with growth and maturation, issues of sexuality and self-esteem and the importance of family issues. Furthermore, the perception of the adult diabetologist was that such patients were transferred only at a time that diabetic control was chaotic. On the other hand, the paediatric view of adult diabetes is an obsession with screening for complications and a care system that involves a whole change of environment and ‘parentectomy’ in the early phase of that change. While all of these problems are important, care of this age group should not be the playing field for a ‘paediatrician versus adult diabetologist competition’. There is a strong case for a philosophy of collaboration between the paediatric and adult services leading to seamless care of the teenager. The views of young people point to other important issues in their care. Credibility and enthusiasm are crucial. It is vital that professionals have an insight into the problems of everyday living with type 1 diabetes. Likewise, continuity, whereby a long term friendly and trusting relationship can be established, is essential. This may have a major impact in avoiding clinic default. Medical anthropology with its qualitative approach on opinion and choice of patients has enlightened us about the care process in our clinics. We have recently studied a large number of young people and it has taught us much about the consultation process27. In particular, the importance of patient–carer reciprocity has been highlighted, whereby giving, receiving and repaying leads to a long term relationship. An example of the breakdown of such reciprocity is the paradox whereby ‘good control’ often invites rejection by less frequent clinic contact. Whether more contact has a greater motivating effect in improving control and avoiding clinical default requires further study. We have learnt further of the value of the clinic environment. A friendly, non-threatening clinic is seen as attractive but this should not mean informal chaos in terms of organisation. Young people with diabetes feel more able to be part of a quality organisation and therefore less inclined to default. We have a strong belief in the importance of clinical screening. However, in our pre-occupation with screening for complications we must take into account a covert wish to talk about the future and the outlook for this group of patients. A system of follow-up and retrieval of the defaulter is vital, and, whilst it is clearly resource intensive, it may intuitively be cost effective in preventing high morbidity in the long term. As long ago as Torsten Deckert's study in 1978 avoidance of default was regarded as one of the best predictors of good outcome in people with type 1 diabetes28. The views of young people with diabetes that we have been exposed to have been invaluable in highlighting many of the problems for this age group but they do present us with dilemmas. Are we dealing with different types and severity of type 1 diabetes—as some professionals believe—or, more likely, are we dealing with same disease in different people? For some, treatment non-adherence and control difficulties are rightly put down to psycho-social and dysfunctional family dynamics. For others it may well represent self-care fatigue, an understandable behaviour pattern during adolescence. Perhaps the biggest dilemma is that whereas diabetes care is clearly a high priority for doctors, it is often not so for the teenager with diabetes. It is crucial to identify poorly controlled teenagers and recognise their special problems. We might openly acknowledge the problems of eating but more particularly that of abnormal insulin treatment behaviour and missing insulin injection as fundamental to the problem. We believe this to be the foundation for an understood basis for the clinical consultation. Credibility of healthcare professionals by patients will only be achieved if a judgmental consultation process of examining blood tests of doubtful meaning, and suggesting minor insulin dose changes, is avoided. For a minority it may be important to simplify the insulin regimes at least to achieve some insulin cover. Furthermore, we are obliged to look at new strategies for support, e.g. problem solving exercises by telephone contact. Most important is that we should maintain clinical contact until we reach the time of the more settled 20s. In 1987, we asked of the young people in our youth Diabetes Project: what would you most like to tell your doctor? The universal answer was ‘it isn't as easy as you think'. We would like to thank all of the medical staff who have supported the Youth Diabetes Project but particularly thank our nursing colleagues who have had such a fundamental role in guiding policy and ensuring care continuity. Finally the role of young people with diabetes has been most important of all.