I Mini-symposium
Diabetes
Specialist clinics for children with diabetes
P. G. F. Swift Specialist clinics for children with diabetes
behavioural changes there has to be a planned programme to facilitate the complex process of change. This process can be divided into five steps following a logical sequence. Each must be completed if management of diabetes is to be fully successful.’
‘The ravages of diabetic complications are not seen in a children’s diabetes clinic. Nevertheless, they haunt the paediatrician who believes that sustained control of the blood glucose concentration will protect today’s children from dying 20 years hence from renal failure’ and other vascular complications.’ Until relatively recently many chronic and potentially disabling conditions such as diabetes received insufficient attention. Dramatic remedies were not available. Long-term ‘total management’ was demanded, including patient participation, in contrast to disorders rapidly reversed by prescription or surgery. When childhood diabetes is well managed it is possible to achieve acceptable metabolic control over many years and the child is able to live an active and healthy life without major social, intellectual or physical restrictions. However, when diabetes in a child is badly managed it becomes malignantly destructive to personal and family life. The management of childhood diabetes depends more upon inter-personal, particularly parent-child, relationships and social harmony than prescriptive manipulations of insulin doses and biochemical expertise. For these reasons designated specialist children’s diabetes clinics should be available for all children with diabetes to provide an environment conducive to broadly based support and comprehensive management.
Information and expertise must be acquired by a
team of health professionals. Responsibility for serf care must be accepted by the
parent and the child. Education of the family must be provided
in an acceptable manner by the professional team. Negotiation of the aims, goals and objectives of management must take place. Evaluation of the success in meeting the objectives (using both qualitative and quantitative measures) with regular feedback must occur. What do parents expect?
Diabetes is a complex disorder which involves the acquisition of much new knowledge, new skills, constant attention, sophisticated monitoring and imposes upon parents a unique degree of medical responsibility. When given the opportunity, parents describe their needs for out-patient management: A non-threatening environment Experience and expertise in diabetes Organisation A unified team Consistency of approach Continuity of personnel Continuing updated information 24-h contact and support
The strategy for a chronic condition
Diabetes requires major and sustained changes in life style and family behaviour. In order to achieve
What services are provided?
Peter G. F. SwWt FRCP, DCH, Consultant Paediatrician, The Children’s Hospital, Leicester Royal Infimary, Leicester LEl sww. Correspondence and requests for offprints to PGFS. Currenr Pnedi~frics 0 1993 Longman
(1993) 3, 147-150 Ltd
GroupUK
In 1988 the British Paediatric Association and British Diabetic Association (BDA) supported a study of 147
148 CURRENT PAEDIATRICS the organisation of services provided with diabetes in the UK.3 The study found that:
for children
37% of Consultant Paediatricians saw children in general paediatric rather than specialist diabetes clinics. 27% of health districts had no specialist children’s diabetes clinic 39% of consultants reported that Diabetes Specialist Nurses did not attend clinics. 30% had no dietitian in attendance. 13% of clinics were staffed by Senior House Officers. 9% did not provide regular glycated haemoglobin. 45% did not provide ‘out of hours’ telephone support. These findings exposed the unmet needs of parents and revealed a patchwork quilt of expertise and organisation. Some districts supplied excellent services, others were grossly deficient. This and a subsequent study4 indicated that the level of services and parental satisfaction depended upon the consultant’s stated level of interest (and expertise) in diabetes.
Are specialist diabetic clinics necessary?
In recent years a number of authors have provided descriptions of children’s diabetes clinics (see textbooks by Craig, Baum, and Drash). Although many paediatricians have readily accepted that specialist clinics in oncology, neurology and cystic fibrosis provide special expertise and produce superior results, there has been a surprising reluctance to organise diabetes clinics along the same lines. Research and clinical audit has confirmed that diabetes clinics improve services and outcome. In Oxford the establishment of a children’s diabetes clinic was associated with fewer hospital admissions due to hyperglycaemia.5 Telephone triage based on the clinic has been shown to reduce emergency room visits and hospital admissions by more than 66%.6 Better blood sugar control has been described in children attending specialist diabetic clinics. ‘** Moreover if the clinic personnel organise special education projects9 or intensification of monitoring there are additional benefits such as improvements in knowledge and further substantial changes in control.” All the studies showing improvements in education, knowledge, monitoring techniques or the need for assistance in the management are dependent upon the presence of Diabetes Specialist Nurses in the clinic.” The introduction of a diabetes clinic with specialist personnel provides extra contact, support and interest. It is not surprising therefore that such an intervention is associated with improvements in aspects of diabetes management - ‘the intervention effect’. I2 Specialist facilities are beneficial to families
and are well received. Conversely if specialist clinic facilities are not available parents are less satisfied.4 Organisation of the diabetes clinic
The children’s diabetes clinic should be viewed as a specialist resource centre - the centre from which expertise flows. General paediatric clinics without such a focus of expertise cannot provide the multidisciplinary approach. The essential components of the diabetes clinic are shown in the Table. Specialist clinics should be consultant led and the middle grade medical staff be of at least registrar level providing continuity of care. The appointment of a clinical assistant, staff grade or community post might be of even more benefit. The clinic should be an information resource providing books, leaflets, videos and dietary aids for children. Many clinics invite local parent support groups to set up stalls to advertise and sell BDA goods and leaflets. Some larger clinics are stratified according to age hoping that parents and children will meet, mix and exchange information. However, clinics are seldom effective meeting places for parents unless special efforts are made.g As adolescence progresses further tensions develop regarding the optimum timing of transfer of the paediatric patient to the adult clinic. This is often a difficult transition and is a time when many youngsters default from follow up. The optimum arrangement is to have a combined young adult clinic, staffed with both paediatrician and adult diabetologist. These are difficult to organise but if successful provide substantial benefits particularly where there is continuity of specialist nurses managing both children and adults. Unfortunately defaulting from clinic in adolescence is one of the most important factors associated with the development of vascular complications. A district diabetic register may help to identify defaulters. The holistic approach
‘There the doctor sits, a moral paragon with a skilled, analytical brain. The first patient enters bearing a slip of paper on which are written his height and Table
The diabetic clinic
1. 2. 3.
Core personnel Consultant paediatrician with special interest in diabetes Diabetes specialist nurse with paediatric expertise Dietitian with special expertise in diabetes
4. 5. 6.
Available personnel Psychologist/psychiatrist Chiropodial service Social worker
7. 8.
Facilities Glycated haemoglobin/fructosamine (preferably capillary method) A district register of all children with diabetes
SPECIALIST CLINICS FOR CHILDREN WITH DIABETES
weight and urine test results. The mother enters bearing urine charts. “How many calories to a pomegranate?” she demands. The doctor considers the data on the slip of paper, the dietitian flips through her reference books. The clinic has begun.’ (See textbook by Craig). Such traditional clinics, doctor dominated, authoritarian and prescriptive are now of course confined to history! Evidence is overwhelming that authoritarianism in both parenting and in paediatrics is associated with rebellion, non-compliance and poor outcome. The last decade has seen major changes in the medical approach to patients. Diabetes has been in the vanguard of this development. Not only have we improved our approach but we have available more refined tools to use - glucose monitoring strips, meters, pure insulins, superb syringes, pen injectors and so on. Technical innovations however are of little value compared with an understanding of and an empathy towards the patient’s condition and background. Thus the modern diabetes clinic should be the place for interactive discussion, negotiation of targets, open ended questions and keeping in touch with the psychological pressures which exist within particular families. Members of the team should be free to discuss problems with the family at various stages in the clinic visit not adhering rigidly to doctor-first, dietitian-last format. Few clinics have the luxury of a child psychiatrist with special expertise in diabetes but when they do some valuable insights and strategies are generated (see textbook by Baum).
149
Many factors lead to deceit, dishonesty, fabrication and fiddling of results and insulin administration. The outcome for the child may be recurrent ketoacidosis, severe hypoglycaemia and discrepancies between monitoring books and HbAl . The outcome for the doctor and team may be disappointment and disillusionment. Here is where expert psychological input may be beneficial but most important is the skill to keep in contact with the family, maintain friendships and scratch the surface for the emotional insecurities.
Conclusion Aims and standards to be expected in each health district
(A) Provision of services 1. A multidisciplinary Paediatric Diabetes Team should be available for all children with diabetes. 2. The core team should consist of: Consultant paediatrician with special interest in diabetes. Diabetes specialist nurse with paediatric expertise. Dietitian with special expertise in diabetes. 3. The team should operate both in hospital and community and have close liaison with primary care and schools. 4. There should be easy access to child psychiatry/psychology and chiropody services. 5. A district diabetes register should be maintained of all paediatric diabetic patients.
Innovations
A stable multidisciplinary team in the diabetes clinic may generate exciting innovations: Educational clinics - change from the traditional one-to-one interview to group discussions with various team members. Diabetic games the Newcastle clinic team (S. Court - personal communication) has devised a number of excellent games, quizzes and questionnaires. The BDA and educational holidays - information should be provided about BDA holidays and teams may well organise local activities (e.g. days out, week-ends away, camps, sports, skiing, outward bound, youth hostelling etc.) Dietary or cooking experiments. Parental response to these initiatives is usually gratifying - children develop a sense of independence, a realisation that they are not alone with diabetes and often exhibit increased self confidence. Delusion, deceit and disappointment
It is a delusion to think that children and parents comply with our advice. Compliance is pathological.
(B) Outpatient facilities 1. Children should be seen in specialist paediatric diabetes clinics, attended by all members of the core team. 2. Medical assistance at sub-consultant level should be at least of Registrar status. 3. 24-h support should be available from Consultant, Diabetes specialist nurse or experienced junior staff. 4. Clinic visits should allow time for discussion with all members of the team and be sensitive to the age and stage of development of the child. 5. Provision of adolescent or young adult clinics should be encouraged to smooth transition to adult clinics. Such clinics should facilitate discussion on smoking, alcohol, contraception, pregnancy, driving vehicles and employment. 6. Data recording (minimum) (a) 6 monthly Height & weight centiles HbAl or Fructosamine Clinical review (e.g. injection sites) (b) 12 monthly Urinary protein Dietary review
1%
CURRENT PAEDIATRICS
(c) 2-3 yearly
Blood pressure Ophthalmic examination (after duration 5 years or age 12 years). Foot examination consider: thyroid function lipid profile anti-gliadin antibodies
(C) Evaluation Quantitative and qualitative audit of the services provided, structure of the clinic and clinical outcome should form an important part of the children’s diabetes clinic.
5. Hardie J, McPherson K, Baum JD. Hospital admission rates of diabetic children. Diabetologia 1979; 16: 225-228. 6. Miller LV, Goldstein J. More efficient care of diabetic patients in a county hospital setting. N Engl J Med 1972; 286: 1388-1391. 7. Allgrove J. Improved Diabetic Control in a District General Hospital. Arch Dis Child 1988; 63: 180-185. 8. Bloomfield S, Farquhar JW. Is a Specialist Paediatric Diabetic Clinic better? Arch Dis Child 1990; 65: 139-140. 9. Bloomfield S, Calder JE, Chisholm V et al. A project in diabetes education for children. Diabetic Medicine 1990; 7: 137-142. 10. Belmonte M, Schiffrin A, Dufresne J. Impact of SMBG on Control of Diabetes as Measured by HbAI. Diabetes Care 1988; 11: 484-488. 11. Moyer A. The specialist nurse and the child with diabetes. Senior Nurse 1987; 7: 31-34. 12. Worth R, Home PD, Johnstone GD et al. Intensive attention improves glycaemic control in insulin dependent diabetes without further advantage from home blood glucose monitoring: results of a controlled trial. BMJ 1982; 285: 1233-1240.
References 1. Baum JD. Children with diabetes. Every health district should have a specialist clinic for their care. BMJ 1990; 301: 5022503. 2. Riddle MC. A Strategy for chronic disease. Lancet 1980; 2: 1344136. 3. British Paediatric Association Working Party. The organisation of services for children with diabetes in the United Kingdom. Diabetic Medicine 1990; 7: 457-464. 4. Lessing DN, Swift PGF, Metcalfe MA, Baum JD. Newly diagnosed diabetes: a study of parental satisfaction. Arch Dis Child 1992; 67: 1011-1013.
Additional reading Oman Craig. Childhood Diabetes and Management. First edition 1977. Butterworths & Co. (Publishers) Ltd London. Baum JD, Kinmonth A-L. Care of the Child with Diabetes. 1985. Churchill Livingstone: Edinburgh and London. Drash AL. Clinical care of the diabetic child. 1986 Yearbook Medical Publishers Inc: Chicago and London.