Diabetes education and insulin therapy: when will they ever learn?

Diabetes education and insulin therapy: when will they ever learn?

Abstract. Miihlhauser 1. Berger M (Medical Department for Metabolic Diseases and Nutrition, WHO-Collaborating Centre for Diabetes. Heinrich-Heine-University of Diisseldorf. Germany). Diabetes education and insulin therapy: when will they ever learn? lourrial oflriternal Medicine 1993: 233: 321-326.

The Diabetes Education Study Group of the European Diabetes Association was founded in 1979 with its major goal to make effective patient training an integral part of any diabetes therapy. However, even today, in many places diabetes education is not an obligatory part of treatment, but is regarded as an optional service to the patient which is frequently fragmentary and haphazard. On the other hand, many physicians still subject their patients to rigid dietary instructions and obedience training, an approach which is mistaken for diabetes education. Several misconceptions about diabetes education keep counteracting the spread and hence the availability of effective treatment and teaching programmes for all Type 1 diabetic patients. One such misconception is that diabetes education could compensate for deficiences of inappropriate insulin treatment regimens. Studies failing to demonstrate the impact of diabetes education on metabolic control, typically used a n insulin treatment regimen with only one or two insulin injections per day, the predominant use of intermediate acting insulin preparations. and without (day-to-day) adjustment of insulin dosages by the patients themselves. A further reason for a lack of success of diabetes education is an unstructured approach which is frequently mistaken for individualized care. The deleterious effects of putting patients on intensified insulin therapy without offering them sufficient and systematic training have manifested themselves a t various places by a n excessive increase in the risk of severe hypoglycaemia. and of ketoacidosis during therapy with continuous subcutaneous insulin infusion. The effective and safe performance of insulin therapy requires both a rational system of insulin substitution and intensive training of the patients to carry it out. The injection of regular insulin before main meals and the use of intermediate or long-acting insulin preparations for the substitution of basal insulin requirements combined with daily metabolic self-monitoring and (day-to-day ) adaptation of insulin dosages by the patients themselves allow a substantial improvement of glycaemic control without a n increase in the risk of severe hypoglycaemia and the adoption of a more flexible life style largely freed from forcing and directive dietary and other impositions. Each diabetes centre should continuously evaluate the quality of care offered to their

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322 I. MCJHLHAIJSEK & M. B E K G E R

patients as a basis for a specitic and systematic improvemrnt of its treatment and education programmes. Such quality control measures must include a recording o f the patients' degree of metabolic control and the frequencies o f severe hypoglycaeniiir and ketoacidosis. The results of such quality control systems need to be made irvailable to t h r public. i.e. the diabetic patients.

K~!y\vords: diabetes. diet. diabetes education. hypoglycaemia. insulin therapy. ketoacidosis.

Nobody would ask a person without professional training to fly an airplane. Even for driving a car in all civilized countries it is mandatory to have a driving licence. High-school graduates who want to become physicians have to pass innumerable examin- ations and physicians who treat insulin-dependent diabetic patients are expected to have an additional training in diabetology. However, for lay-persons who manifest diabetes and have to carry out insulin- therapy, adequate training is still not obligatory. Instead. simply handing the patients insulin, syringes and a book and telling them to get on with it and become streetwise by a process of trial and error is still considered an option [ 11. No doubt, patients will find a way to survive, they have to, but frequently at the high cost of severe restraints of eating habits and daily life activities. an undue risk of severe hypoglycaemia. and unacceptably high blood glucose values.

The person who develops insulin-dependent diabetes is usually a non-professional with no or only limited medical knowledge. Already during the first years of insulin therapy in the early twenties, outstanding diabetologists. like Dr E. P. Joslin of Boston, realized the fundamental importance of patient education in diabetes therapy [ 2 ] . According to Joslin the patient had to become his/her own doctor in order to carry out insulin therapy effectively and safely. Before every main meal the patients had to measure the glucose concentration in the urine and calculate by themselves the dose of insulin to be injected. For Joslin it was clear, right from the beginning. that enabling a lay person to practise insulin therapy was only possible through an intensive and structured training programme, and that this, in turn, required specially trained personnel. It was he who first defined the role of the diabetes nurse educator. The possibility of assessing long- term metabolic control by measuring glycosylated haemoglobin values and the introduction of blood glucose self-monitoring have revived the interest in diabetes education during the past 1 5 years. The

Diabetes Education Study Group of the European Diabetes Association was founded in 1979 with its major goal to make effective patient training an integral part of any diabetes therapy [ 3 I .

In the light of these considerations it appears strange that even today at many places diabetes education is not an obligatory part of treatment. but rather is regarded as an optional service to the patient. which is frequently fragmentary, inappropriate. haphazard, and unstructured (i.e. determined by the individual arbitrariness of the treating physician), something which can quite easily be abandoned by the excuse of lack of time and/or money. On the other hand, many physicians still subject their patients to rigid dietary instructions and obedience training, an approach which is often mistaken for 'diabetes education '. This negligence of withholding adequate training from diabetic patients seems to be encouraged by the iterative quotation of a few publications allegedly showing the ineffectiveness of diabetes education [ 11.

One reason for this lamentable situation lies in a profound misunderstanding about what diabetes education is. what it can and what it cannot achieve. A most prevailing and consequential misconception is that diabetes education could compensate for deficiencies of inappropriate insulin treatment regimens. IJsually, we do not expect somebody to travel a distance of 100 kilometres within 1 h by just equipping the person with a bicycle. However. in the studies failing to demonstrate the impact of diabetes education on metabolic control [4-h]. typically. patients were merely provided with a rudimentary equipment for insulin therapy, which by no effort would have allowed them to improve glycaemic control to a significant and lasting extent. Thus. in the study by Korhonen Pt (11. 141 h 5 % of the patients were supplied with only one and 22% with two daily injections of intermediate acting insulin without regular insulin at their disposal. Glycosylated haemoglobin values were not measured in this study and therefore, this essential information was not

DIABETES EDUCATION AND INSULIN THEKAPY 323

available to the patients. The study by l3loomgarden ( s t ( 1 1 . [ 51 recruited obese patients with ii mean body mass index of around 3 1 k g m '' and is thus of limited relevance for type 1 (IDIIM) diabetic patients. Thr authors did not give any information on the insulin treatment used. but mentioned. that ' the program was not designed as a therapeutic intervention aimed at improving metabolic control per sr with self-monitoring of blood glucose and algorithms for insulin dose adjustment ... '. Instead. the so-called education programme comprising nine teaching sessions (with a drop-out rate of almost SO[%,) imposed on the patients a series of constraining nutritional prescriptions with the unrealistic and hence drmotivating goal of achieving ideal body weight. It is clear that under the described insulin- trratment conditions any efforts of patients to eat less will come to a frustrating end as soon as they start to experience hypoglycaemia and the only remedy they have at their disposal is to eat more. rather than to prevent hypoglycaemia by reducing their insulin dosages. The most recent study failing to show signiticant effects of an education programme for insulin-dependent diabetic patients on metabolic control. quality of life or costs of therapy by Weerdt vt r r l . [h ] . is a further example of the vain enterprise to submit patients to ti so-called education programme without paying attention to insulin therapy. On average. patients injected insulin less than twice daily and less than 5O[,x, used regular insulin. Accordingly. the teaching programme lacked theor- rtical and practical training of the patients on how to adjust insulin dosages by themselves in order to improve their blood glucose values. At best, such traching programmes. which are separated from. rathrr than integrated into an adequate insulin trratmrnt programme. will increase the patients' iiwiireness of their insufficient metabolic control. I h t . unfortunately. they will leave them without the necessary tools and. absurdly so. the necessary knowledge to improve it.

In line with such a perception ofdiabetes education is thc niisconcrption that just by increasing attention on part ol' the health care providers (e.g. by patients' participation in ii clinical trial) the metabolic control ol'thr patient will automatically improve [ 1 ] and that such a n approach is at least tis effective as diabetes education. One publication continuously referred to in ordrr to substantiate this view is B studv by Worth rt r r l . particularly addressing this question [ 71. In this inwstigation. intensivr individual ro~inselling by ti

diabetologist only led to a transient fall of HbAl levels. At the end of the study. after a total of 1 5 months, HbAl levels were on average 1% higher than before the intervention. Their data disprove rather than support the widespread misinterpretation of the study promoted already by the misleading title of the publication. In accordance with these tindings. in the study by Weerdt ~t d. [(I] , HbAlc levels were high and remained unchanged throughout the study period of 6 months. both in the control group and the intervention group. In the Diabetes Control and Complications Trial I S ] . in the control group HbAlc levels after 3 years were marginally higher than the initial values despite contacts with the health care team every 3 months. This does not mean that continuous empathic support of the patient is not a n important determinant for the degree of long-term metabolic control, but the indispensable basis for a signiticant and lasting improvement of glycaemic control is a rational strategy of insulin substitution. Coming back to our allegory this would mean supplying our test subject with an adequate vehicle. e.g. a car. instead of a bicycle. However. in the above mentioned studies, an insufficient insulin treatment regimen was used with only one or two insulin injections per day, the predominant use of intermediate acting insulin preparations and. in line with this, without (day-to-day) adjustment of insulin dosages by the patients themselves. Typically. such an unphysiological insulin substitution is to be combined with most rigid dietary prescriptions. The insufficient degree of metabolic control. which is usually associated with such a treatment approach is well documented [ i , 9 [ and is also manifest in the studies allegedly showing the ineffectiveness of diabetes education. Thus, rather than disproving the need for diabetes education these studies demonstrate that the lack of supplying patients with appropriate equipment for insulin substitution cannot be made up by any progamme be it educational. motivational or by just increasing attention. In addition. the studies by Worth I't nl. [ 71 and by M'ecrdt ( a t r r l [ are further examples of the useless exercise of bothering patients with the frustrating task performing blood glucose self-monitoring without enabling them to interpret and immediately react to the results by adequately adapting their (insulin-) therapy.

I n this context. another repeatedly rxpressrd argument against diabetes education should lose ground. i.e. the fiiilurc of various studirs to document the association betwrrn diabetes-rclatrd linowlcdgr

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324 I. MUHLHAUSER & M. B E R G E R

and metabolic control [ I ] . Based upon common sensc alone, it appears indisputable that such an association must exist. Furthermore, it is clear, that a number of prerequisites have to be fulfilled in order to demonstrate this relationship. First, the knowledge which is assessed has to be relevant to the achievement of good metabolic control. Thus, e.g., knowledge about the prevention of hypoglycaemia by reducing insulin dosages according to certain algorithms is of importance, whereas knowledge about the fat or protein content of various nutrients is not. Secondly, the knowledge test used has to be valid and reliable, i.e. it has to evaluate exactly what has been taught. Thus, if the patient is taught what he/she really needs to know, and the knowledge test measures what it should measure, one will find what everybody would expect to find, i.e. that only a patient who knows how to treat his/her diabetes will be able in the long run to achieve the goals of diabetes care. Needless to say. knowledge is indispensable, but is by no means the only factor determining long-term metabolic control.

How satisfactory standards of diabetes care. in- cluding improved metabolic control, can be achieved by making rational use of modern facilities for insulin therapy has been documented repeatedly during the last 1 0 years [ 3 . 10-12]. The injection of regular insulin before main meals and the use of intermediate or long-acting insulin preparations for the substitution of basal insulin requirements, or treatment with continuous subcutaneous insulin infusion [ 1 3 I . combined with daily metabolic self-monitoring (pref- erably blood glucose monitoring) and (day-to-day) adaptation of insulin dosages by the patients themselves allow a substantial improvement of glycaemic control. Patients who practise this more physiological insulin therapy. which in fact is nothing other than the modern version of the treatment strategy recom- mended by J o s h 121. can liberalize their diet to a considerable extent [ 3, 12-14] and can (re-)adopt a more flexible life style largely freed from forced and directive treatment prescriptions. No doubt, patients who want to start such an intensified insulin therapy must get a comprehensive training. even if they have had diabetes already for many years. In fact. it has been shown that equipping patients with such modern facilities for insulin substitution combined with an intensified education programme is warranted and accepted hy the majority of patients and leads to a long-lasting and significant improvement of blood glucose control. not only under the

circumstances of research projects, but also under the conditions of routine medical care [ 3. 12. 1 5 I .

In parallel to these developments in modern clinical diabetology a further facet of the misconceptions about diabetes education has become apparent. I t manifests itself in the persistent call for evaluation studies to demonstrate the 'independent effect' of diabetes education, i.e. of education per SP. in the context of intensified insulin treatment programmes [ l ] . Such studies can only be demanded. if one assumes that intensified insulin therapy can be performed without a special training of the patients. Referring again to our allegory. this would mean equipping the test subject with an adequate vehicle, e.g. a car (i.e. intensified insulin therapy). but without telling the person how to operate it. The result is likely to be disastrous or, at best, without any benefit to the patient. Likewise. the effective and safe performance of insulin therapy requires both a rational system of insulin substitution and intensive training of the patients to carry it out. i.e. by metabolic self-monitoring and (day-to-day ) adaptation of insulin dosages. Thus, to ask for a proof of the 'independent effect ' of diabetes education on metabolic control in intensified insulin therapy appears absurd. (The only thing one could and should argue about in this context is which training method is the most efficient one.) While the dis- cussions about the impact of diabetes education continue, the deleterious effects of putting patients on intensified insulin therapy without offering them sufficient and systematic training have manifested themselves at various places by an excessive increase in the risk of severe hypoglycaemia. and of ketoacidosis during therapy with continuous subcutaneous insulin [ 1 h. 171. In our view, the lack of appropriate patient education is the most important. preventable cause of iatrogenic hypoglycaemia and can explain the substantial differences which exist between diabetes centres with respect to the incidence of severe hypoglycaemia associated with insulin therapy, be it so-called conventional or intensified.

Another misconception about diabetes education keeps counteracting the Spread and hence the availability of effective treatment and teaching programmes for all Type 1 diabetic patients, that is the demand for individualization of education combined with an expressed suspicion about 'structuring' education programmes 11 I . At best. the idea of individual teaching reminds of times when

school education was the privilege of an upper class minority disposing of private teachers. who came to the homes of their pupils. h’hen education was guaranteed for all members of society. the individual teaching was substituted by the group approach and this system of teaching has proven practicable and effective in many other tields of life today. ‘Education‘ has become a scientitic discipline and. nowadays. teachers not only have to learn what to teach but also how to teach (instructors and professors of the Medical Faculty being a notable exception 1. Modern educational methods have abandoned the traditional authoritarian one-way transfer of information in favour of techniques of interactive learning within small groups. I t is noteworthy that. a multidisciplinary approach integrating professional cducationalists in the process of planning. implemen- ting and evaluating diabetes treatment and teaching programmes has been promoted by the Diabetes Education Study Group for many years and has been applied with great success at various places [ 31. Effective transfer of knowledge and competence to carry out (intensitied) insulin therapy requires at least 10-20 hours, be it individual or group teaching. Whether the individual or group approach is more effective in diabetes education has, so far, not been answered in a scientific sense. Both methods have theoretical advantages and disadvantages, and if these were taken adequately into account, both methods could be equally effective. However, in practice circumstantial factors become decisive. Thus, considering the cost-effectiveness, personnel- time relationship. group education appears the only rational approach, if one attempts to offer effective care to all adult type 1 diabetic patients. especially in densely populated areas with millions of inhabitants and in countries, where up to now only minimal patient education has been offered [12. 181. In addition. as has been learned from the professional educationalists. an indispensable basis for the continuous evaluation and improvement of any intervention in a given diabetes centre is to structure both components of diabetes treatment. insulin therapy and the education programme. Further- more, a structured performance of the education programme is necessary to assure that every par- ticipating patient will get the knowledge and competence he/she needs. In contrast. the unstructured approach. which is frequently mistaken for individualized care, is prone to mis-practice in a sense that the time/interest/mood of the treating

physicians. rather than the needs of the individual patient, determine the structure of the interaction. leaving the patient with fragmentary and confusing information. For any kind of effective education, be it group or individual, the personnel, whether nurses or physicians, must be trained in modern teaching techniques. ‘Teaching the teachers ‘ has become a priority task of the Diabetes Education Study Croup

Modern strategies of care for type 1 diabetic patients, integrating the offer of intensitied insulin therapy on the basis of an intensified structured educational programme, aiming at training the patient to perform self-control and self-treatment, need to be backed-up by vigorous quality control systems to be carried out independently by each diabetes centre. The continuous quality-control measures for the therapy offered to type 1 diabetic patients by a diabetes centre need to include the incidence rates for acute complications, such as severe hypoglycaemia and diabetic ketoacidosis. a recording of the patients’ degree of glycaemic control (HbAlc) and. albeit methodologically more difficult, an assessment of the patients’ quality of life. For the future, we suggest that each diabetes centre is being asked to continuously perform such quality control for their patients as a basis for a specific and systematic improvement of its treatment and education programmes and that the results of such quality control systems are being made available to the public, i.e. to the diabetic patients.

Strategies for effective insulin substitution and patient education programmes for patients with type 1 diabetes have been outlined and evaluated in detail. These programmes, such as the structured Geneva-Diisseldorf 5-day in-patient treatment and teaching programme [3]. result in an improvement of metabolic control without an increase of severe hypoglycaemia. a substantial reduction of hospitaliz- ation days and the possibility for the patients to liberalize their diet and become more independent of physicians and health care institutions 1 3 . 12-16]. In recent years the programme has been effectively translated to non-specialized hospitals in Germany [ 151 and to many other diabetes centres in different countries [3. 12 , 19, 201.

In the interest of our patients and our health care systems it is hard for us to understand why this or similarly effective programmes are not being enforced on a widespread basis as an obligatory part of the care for patients with type 1 diabetes, whilst some

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DIABETES EDUCATION A N D INSIJLIN THEKAPY 3 2 5

diabetologists still philosophize about \vhy their education programme does not work in patients under the circumstances at their centres. I f neither common sense, nor I)r J o s h [, I . nor the published evidence during the last 1 0 years will convince such diabetologists. no doubt. some day their patients will. maybe by going to another diabetes centre.

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Received 9 September 1992. accepted 1 Octohcr 1992

~ ‘ o r r r ~ s ~ ~ r i r i r l ~ ~ r ~ ~ ~ r ~ : Ilr Ingrid Miihlhauscr. Mediziiiischr Klinik rlrr Ilniversitiit Iliisseldorf. Abteilung Stoffwechsel uiid 1:riiiihriiii~. MotrrenstraPe 5. 11-4000 1)iisseldorf. ( h n i i i i y .

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Diabetes education and insulin therapy: when will they ever learn?