Type 1 Diabetes (Childhood): Diagnosis and Management of Type 1 Diabetes in. Primary and Secondary Care. National Collaborating Centre for

Transcription

1 Type 1 Diabetes (Childhood): Diagnosis and Management of Type 1 Diabetes in Primary and Secondary Care National Collaborating Centre for Women s and Children s Health Commissioned by the National Institute for Clinical Excellence First draft for consultation ( )

2 Contents List of tables and figures...5 Abbreviations and glossary of terms...6 Guideline Development Group membership and acknowledgements Introduction Aim of the guideline Areas outside the remit of the guideline Who has developed the guideline? For whom is the guideline intended? Guideline methodology Summary Summary of recommendations Future research recommendations Algorithm Diagnosis and initial management Diagnosis Place of management immediately after diagnosis Natural history of type 1 diabetes...42 National Collaborating Centre for Women s and Children s Health Page 2 of 198

3 3.4 Essential education at diagnosis Ongoing management Insulin preparations Insulin regimens Methods of delivering insulin Non-insulin agents (oral antidiabetic drugs) Monitoring glycaemic control Diet Exercise Alcohol, smoking and drugs Education Complications and associated conditions Hypoglycaemia Diabetic ketoacidosis Surgery Intercurrent illness Screening for complications and associated conditions Psychological and social issues Behavioural problems in children with type 1 diabetes Anxiety and depression National Collaborating Centre for Women s and Children s Health Page 3 of 198

4 6.3 Eating disorders Cognitive disorders Behavioural and conduct disorders Non-adherence Psychosocial support Adolescence Continuity of care Communication between organisations Transition from paediatric to adult care Auditable standards Appendix 1 Clinical evidence forest plots References National Collaborating Centre for Women s and Children s Health Page 4 of 198

5 List of tables and figures To be completed. National Collaborating Centre for Women s and Children s Health Page 5 of 198

6 Abbreviations and glossary of terms Abbreviations CI Confidence interval CGMS Continuous glucose monitoring system CSII Continuous subcutaneous insulin infusion DCCT Diabetes Control and Complications Trial GDG Guideline Development Group GPP Good Practice Point GRP Guideline Review Panel HbA 1, HbA 1c Glycated haemoglobin LSHTM London School of Hygiene and Tropical Medicine NCC-WCH National Collaborating Centre for Women s and Children s Health NICE National Institute for Clinical Excellence NICE TA NICE Technology Appraisal NNT Number needed to treat OGTT Oral glucose tolerance test OR Odds ratio QALY Quality adjusted life year RCT Randomised controlled (clinical) trial RR Relative risk (or risk ratio) SD Standard deviation WMD Weighted mean difference Glossary of terms To be completed. National Collaborating Centre for Women s and Children s Health Page 6 of 198

7 Guideline Development Group membership and acknowledgements Guideline Development Group Stephen Greene Jeremy Allgrove Timothy Barrett Vincent Connolly James Cripps Jo Dalton Alan English Jane Houghton Mustafa Kapasi Gill Regan Carol Williams Paediatrician and Group Leader Paediatrician Paediatrician Physician Consumer Representative Specialist Nurse Practitioner, Paediatric Diabetes Clinical Psychologist Nurse Consultant General Practitioner Paediatric Dietitian Consumer Representative Jane Thomas Anna Burt Greg Eliovson Natalie Terry Hannah-Rose Douglas Dimitra Lambrelli Director, National Collaborating Centre for Women s and Children s Health (NCC-WCH) Research Fellow, NCC-WCH Informatics Specialist, NCC-WCH Administrative Support, NCC-WCH Health Economist, London School of Hygiene and Tropical Medicine (LSHTM) Health Economist, LSHTM Additional support was received from: Anna Bancsi, Heather Brown, Susan Davidson, Jennifer Gray, Ann-Britt Jones, Irene Kwan, Alex McNeil, Moira Mugglestone, Susan Murray, Deirdre Quinlan, Felix Ram and Amanda Sage at the NCC- WCH; Carol Carson at the Royal Hospital for Sick Children, Edinburgh; Jessica Datta and Hannah Olle at the National Children s Bureau; and Hilary Jackson at the National Collaborating Centre for Chronic Conditions. Peer reviewers and stakeholder organisations To be completed. National Collaborating Centre for Women s and Children s Health Page 7 of 198

8 1 Introduction Type 1 diabetes is a continuing hormonal deficiency disorder that has significant shortterm impacts on health and lifestyle and is associated with major long-term complications and reduced life expectancy. People with type 1 diabetes require insulin-replacement therapy from diagnosis. There are more than 1 million people with diagnosed diabetes in England and Wales (and perhaps a similar number with undiagnosed diabetes), with type 1 diabetes accounting for 15 20% of all diabetes cases. However, a recent survey showed that about children aged 0 16 years attended paediatric diabetes centres in England. 1 [evidence level III] Of these, 95% had type 1 diabetes and 1% had non-type 1 diabetes (the type of diabetes was not specified in 4% of cases). 1 [evidence level III] Keeping blood glucose concentrations as close as possible to the normal non-diabetic range is known to prevent or to delay the long-term vascular complications of diabetes. Systems of surveillance for the early detection of complications are important, as is effective management of complications when they occur. 1.1 Aim of the guideline Clinical guidelines have been defined as systematically developed statements, which assist clinicians and patients in making decisions about appropriate treatment for specific conditions. This guideline addresses the diagnosis and management of children with type 1 diabetes. (A separate guideline addresses the diagnosis and management of adults with type 1 diabetes refer to adult guideline.) The guideline has been developed with the aim of providing guidance on: initial management at diagnosis (including consideration of admission criteria and initial insulin regimens); continuing care of children with type 1 diabetes; ongoing monitoring of glycaemic control (including the role of home glucose monitoring and the frequency of HbA 1c measurement); management of hypoglycaemia (insufficient blood sugar) and hypoglycaemic coma; National Collaborating Centre for Women s and Children s Health Page 8 of 198

9 prevention and management of diabetic ketoacidosis (including the management of intercurrent illness); peri-operative management of children with type 1 diabetes; and surveillance for complications. The guideline also addresses the special needs of adolescents and the interface between paediatric and adult services. 1.2 Areas outside the remit of the guideline The guideline does not address: the management of women with type 1 diabetes who wish to conceive or are pregnant; the management of women who develop type 1 diabetes during pregnancy; or the management of non-type 1 diabetes. A separate guideline on diabetes in pregnancy (covering type 1 diabetes, type 2 diabetes and gestational diabetes) may be developed in the future. 1.3 Who has developed the guideline? The guideline was developed by a multi-professional and lay working group (the Guideline Development Group; GDG) convened by the National Collaborating Centre for Women s and Children s Health (NCC-WCH). Membership included: two consumer representatives; two paediatric diabetes nurses; three paediatricians; a paediatric dietitian; a general practitioner; a clinical psychologist; and an adult physician with an interest in adolescence. National Collaborating Centre for Women s and Children s Health Page 9 of 198

10 Staff from the NCC-WCH provided methodological support for the guideline development process, undertook systematic searches for evidence, retrieved and appraised the evidence, and prepared successive drafts of the guideline. In accordance with guidance from the National Institute for Clinical Excellence (NICE), all GDG members interests were recorded on a standard declaration form that covered consultancies, fee-paid work, share-holdings, fellowships, and support from the health care industry. 1.4 For whom is the guideline intended? This guideline is of relevance to those who work in or use the National Health Service in England and Wales, in particular: primary and secondary healthcare professionals who have direct contact with and make decisions concerning the care of young people with type 1 diabetes (including dietitians, general practitioners, nurses, paediatricians and physicians); those with responsibilities for commissioning and planning health services including Primary Care Trust commissioners, Health Commission Wales commissioners, public health and trust managers, and children with type 1 diabetes, their parents and other carers. The guideline is also relevant to (but does not cover the practice of) those who work in: social services and the voluntary sector; services supplied by secondary and tertiary specialties for the complications of type 1 diabetes (for example, cardiology, ophthalmology, renal, and urology services) to whom patients may be referred; and the education and child care sectors. 1.5 Guideline methodology This guideline was commissioned by NICE and developed in accordance with the guideline development process outlined in The Guideline Development Process Information for National Collaborating Centres and Guideline Development Groups (available at National Collaborating Centre for Women s and Children s Health Page 10 of 198

11 1.5.1 Literature search strategy The aim of the literature review was to identify and synthesise relevant published evidence to answer specific clinical questions formulated and agreed by the GDG. Searches were performed using generic and specially developed filters, relevant medical subject heading terms and free-text terms. Details of all literature searches are available from the NCC- WCH. Searches were carried out for each topic of interest. The Cochrane Library (up to Issue 3, 2003) was searched to identify systematic reviews (with or without meta-analyses) of randomised controlled trials (RCTs) as well as individual RCTs. The electronic databases MEDLINE (Ovid version for the period January 1966 to September 2003), EMBASE (Ovid version for the period January 1980 to September 2003), the Cumulative Index to Nursing and Allied Health Literature (Ovid version for the period January 1982 to September 2003), PsychInfo (Ovid version for the period January 1974 to September 2003), and the Database of Abstracts of Reviews of Effects were also searched. There was no systematic attempt to search the grey literature (conferences, abstracts, theses and unpublished trials). The National Guidelines Clearinghouse database, the Turning Research into Practice database and the Organising Medical Networked Information service on the Internet were searched for guidelines produced by other development groups. The reference lists in these guidelines were checked against our searches to identify any missing evidence. A preliminary scrutiny of titles and abstracts was undertaken and full copies of all publications that addressed the GDG s clinical questions were obtained. Following a critical appraisal of each publication, studies not relevant to any particular clinical question were excluded. Studies that did not report relevant outcomes were also excluded. Evidence submitted by stakeholder organisations that was relevant to the GDG s clinical questions and was of equivalent or better quality than evidence identified in the literature searches was also included. It was thought that there would not be a large body of economic evidence and that specific searches could miss some relevant studies. A general search was therefore designed to find all economic studies relating to children with type 1 diabetes. Additional search terms National Collaborating Centre for Women s and Children s Health Page 11 of 198

12 relating to economic studies were added to a search string for identifying the clinical effectiveness evidence on children with type 1 diabetes. A second search on topics relating to education and psychological interventions was also undertaken. The searches were undertaken using the same databases as the clinical effectiveness searches. Additional searches were undertaken of the Health Economic Evaluations Database and the National Health Service Economic Evaluations Database. Abstracts and/or database reviews of papers that were identified by the economic searches were reviewed and excluded if they contained no economic data or if the focus of the paper explicitly excluded children. Relevant references in the bibliographies of reviewed papers were also identified and reviewed Synthesis of clinical effectiveness evidence Evidence relating to clinical effectiveness was classified using the established hierarchical system shown in Table 1. 2 This system reflects the susceptibility to bias inherent in particular study designs. The type of clinical question dictates the highest level of evidence that may be sought. For issues of therapy or treatment, the highest possible level of evidence is a systematic review or meta-analysis of RCTs (evidence level Ia) or an individual RCT (evidence level Ib). For issues of prognosis, the highest possible level of evidence is a cohort study (evidence level IIb). For each clinical question, the highest available level of evidence was selected. Where appropriate, for example, if a systematic review, meta-analysis or RCT existed in relation to a question, studies of a weaker design were ignored. Where systematic reviews, metaanalyses and RCTs did not exist, other appropriate experimental or observational studies were sought. For diagnostic tests, test evaluation studies examining the performance of the test were used if the efficacy of the test was required, but where an evaluation of the effectiveness of the test in the clinical management of patients and the outcome of disease was required, evidence from RCTs or cohort studies was used. Table 1 Levels of evidence National Collaborating Centre for Women s and Children s Health Page 12 of 198

13 Level Ia Ib IIa IIb III IV Source of evidence Systematic review or meta-analysis of randomised controlled trials At least one randomised controlled trial At least one well-designed controlled study without randomisation At least one well-designed quasi-experimental study, such as a cohort study Well-designed non-experimental descriptive studies, such as comparative studies, correlation studies, case control studies, and case series Expert committee reports, opinions and/or clinical experience of respected authorities Evidence was synthesised qualitatively by summarising the content of identified papers in evidence tables and agreeing brief statements that accurately reflected the evidence. Quantitative synthesis (meta-analysis) was performed where appropriate. Summary results and data are presented in the guideline text. More detailed results and data are presented in the accompanying evidence tables. Where possible, dichotomous outcomes are presented as risk ratios (RRs) with 95% confidence intervals (CIs), and continous outcomes are presented as mean differences with 95% CIs. Statistically significant RRs are also presented as numbers needed to treat (NNTs) where appropriate. Meta-analyses based on dichotomous outcomes are presented as pooled ORs with 95% CIs, and meta-analyses based on continuous outcomes are presented as weighted mean differences (WMDs) with 95% CIs. The results of meta-analyses that were performed specifically for this guideline are also presented as forest plots in Appendix Health economics The purpose of the economic input to the guideline was to inform the GDG of potential economic issues that needed to be considered, to review the economic literature, and to carry out economic analyses agreed with the GDG where appropriate data were available. Since the overall body of literature was expected to be small, the economic review considered all types of economic studies (cost-benefit, cost-effectiveness, cost-utility, costconsequence and cost-minimisation). The cost data were only considered if they were National Collaborating Centre for Women s and Children s Health Page 13 of 198

14 generalisable to the England and Wales setting, or if resource use was described in sufficient detail to be able to apply United Kingdom cost data. It was agreed that economic models using data from the literature review should be considered where guideline recommendations had major resource implications, or represented a change in policy, or where clinical effectiveness data from well conducted studies were available Forming and grading recommendations For each clinical question, recommendations were derived using, and explicitly linked to, the evidence that supported them. Where possible, the GDG worked on an informal consensus basis. Where necessary, formal consensus methods (such as modified Delphi and nominal group techniques) were used to agree recommendations and audit criteria. Each recommendation was graded according to the level of evidence upon which it was based using the established system shown in Table 2. 2 For issues of therapy or treatment, the best possible level of evidence (a systematic review or meta-analysis or an individual RCT) would equate to a grade A recommendation. For issues of prognosis, the best possible level of evidence (a cohort study) would equate to a grade B recommendation. However this should not be interpreted as an inferior grade of recommendation because it represents the highest level of relevant evidence. Table 2 Grading of recommendations Grade A B C D GPP NICE TA Basis for recommendation Based directly based on level I evidence Based directly on level II evidence or extrapolated from level I evidence Based directly on level III evidence or extrapolated from level I or level II evidence Based directly on level IV evidence or extrapolated from level I, level II or level III evidence Good practice point based on the view of the Guideline Development Group Recommendation taken from a NICE Technology Appraisal National Collaborating Centre for Women s and Children s Health Page 14 of 198

15 1.5.5 External review The guideline has been developed in accordance with the NICE guideline development process. This has included giving registered stakeholders the opportunity to comment on the scope of the guideline, the first draft of the full and summary guidelines and the final draft of the guideline. In addition the first draft was reviewed by nominated individuals with an interest in type 1 diabetes and an independent Guideline Review Panel (GRP) established by NICE. The comments made by the stakeholders, peer reviewers and the GRP were collated and presented anonymously for consideration by the GDG. All comments were considered systematically by the GDG and the resulting actions and responses were recorded Outcome measures used in the guideline For this guideline, the management of type 1 diabetes has been assessed against a number of outcome measures linked to physical and behavioural responses to care. Some of the outcome measures relate to responses that are regarded as beneficial (such as maintenance of glycaemic control), while others relate to responses that are regarded as undesirable (such as episodes of severe hypoglycaemia and diabetic ketoacidosis). Priority outcome measures, which were agreed by the GDG on the basis of their relevance to patients and professionals, are shown in Table 3. Where evidence relating to priority outcome measures was unavailable, secondary outcome measures were considered. For example, total cholesterol was regarded as a secondary outcome measure for lipid regulation. Table 3 Priority outcome measures Outcome category Glucose regulation Specific outcome measures Glycaemic control Glycated haemoglobin (HbA 1 and HbA 1c ) Blood glucose concentration Diabetic ketoacidosis Severity of hypoglycaemia National Collaborating Centre for Women s and Children s Health Page 15 of 198

16 Hypoglycaemic awareness Frequency of hypoglycaemia Lipid regulation Triglycerides Low density lipoprotein cholesterol High density lipoprotein cholesterol Endocrine function Normal growth, height and weight Body mass index Sexual maturation Cardiovascular function Blood pressure Ocular function Retinopathy Juvenile cataract Renal function Urine protein excretion ( micro-albuminuria ) Hospitalisation Number and duration of hospital admissions Emergency admissions Physical activity Participation in physical activity Psychological factors Psychological well-being, including self-esteem Eating disorders Quality of life Diabetes knowledge Psychosocial factors School participation/absence Clinic attendance Education Knowledge Terminology used in the guideline The internationally agreed term type 1 diabetes 3 is used in this guideline, rather than insulin-dependent diabetes mellitus. Similarly, type 2 diabetes is used in the guideline where appropriate, rather than non-insulin-dependent diabetes mellitus. The guideline relates to the care of children (people under the age of 18 years). Where appropriate, the following terms are used to refer to specific age groups: neonates ( 0 weeks and < 6 weeks); infants ( 6 weeks and < 52 weeks) pre-school children ( 1 year and < 5 years) National Collaborating Centre for Women s and Children s Health Page 16 of 198

17 primary school children ( 5 years and < 11 years) adolescents ( 11 years and < 18 years); and adults ( 18 years). Where children are too young to make informed decisions, their treatment and care should be discussed in consultation with their parents (or legal guardians). National Collaborating Centre for Women s and Children s Health Page 17 of 198

18 2 Summary 2.1 Summary of recommendations 3 Diagnosis and initial management 3.1 Diagnosis The diagnosis of type 1 diabetes in children should be based on the 1999 World Health Organization criteria. [D] Consideration should be given to the possibility of other types of diabetes in children who: [GPP] have a strong family history of diabetes are obese at presentation are not white have an insulin requirement of less than 0.5 units per kg body weight per day outside a partial remission phase have no insulin requirement rarely or never produce ketonuria with episodes of hyperglycaemia show evidence of insulin resistance (for example, acanthosis nigricans) have associated features, such as eye disease, deafness, or another systemic illness/syndrome. Children with type 1 diabetes should be entered on a population-, practice- or clinicbased diabetes register. [GPP] 3.2 Place of management immediately after diagnosis National Collaborating Centre for Women s and Children s Health Page 18 of 198

19 Children with newly diagnosed type 1 diabetes should be offered home-based management with appropriate support from a local paediatric diabetes care team (including 24-hour telephone access to advice) because this has been shown to be safe and equally effective as hospital-based management. [A] Children who present with diabetic ketoacidosis should have their diabetic ketoacidosis treated in hospital according to the protocol outlined in this guideline. [D] Infants and pre-school children with type 1 diabetes, and those with social and/or emotional difficulties, should be offered hospital-based initial management. [GPP] 3.3 Natural history of type 1 diabetes Children with newly diagnosed type 1 diabetes should be informed that they may experience a partial remission phase (or honeymoon period) during which a low dose of insulin (0.5 units per kg body weight per day) may be sufficient to maintain an HbA 1c level of less than 7%. [D] Children with type 1 diabetes should be informed that multiple daily insulin injection regimens and continuous subcutaneous insulin infusion (or insulin pump therapy) will not prolong the partial remission phase, although these forms of therapy may be appropriate for optimising glycaemic control, especially in adolescents. [A] Children with type 1 diabetes and their parents should be offered appropriate emotional support following diagnosis. [GPP] 3.4 Essential education at diagnosis Children with newly diagnosed type 1 diabetes should be offered a structured programme of care and education covering the aims of insulin therapy, delivery of insulin, self-monitoring of blood glucose, the effects of diet, exercise and intercurrent illness on glycaemic control, and the detection and management of hypoglycaemia. [D] National Collaborating Centre for Women s and Children s Health Page 19 of 198

20 4 Ongoing management 4.1 Insulin preparations In accordance with the manufacturers recommendations, short-acting insulin should be injected minutes before a meal, and rapid-acting insulin should be injected at the time of a meal. In some situations (for example, in neonates, infants and pre-school children with unpredictable eating habits) rapid-acting insulin may need to be injected after a meal. [GPP] Children with type 1 diabetes using multiple daily insulin regimens should be informed that rapid-acting insulin analogues should be injected immediately before eating. [B] In young children with type 1 diabetes, especially pre-school children, it may be appropriate to inject rapid-acting insulin analogues immediately after eating. [GPP] Insulin glargine is recommended as a treatment option for people with type 1 diabetes. [NICE TA] 4.2 Insulin regimens Adolescents with type 1 diabetes should be offered multiple daily injection regimens to optimise their glycaemic control. [A] Multiple daily injection regimens should only be offered as part of a package of care that involves continuing education, dietary management, instruction on the use of insulin delivery systems and blood glucose monitoring, emotional and behavioural support, and medical, nursing and dietetic expertise in paediatric diabetes because this improves glycaemic control. [C] Children using multiple daily injection regimens should be informed that they might experience an initial increase in the risk of hypoglycaemia and short-term weight gain. [B] National Collaborating Centre for Women s and Children s Health Page 20 of 198

21 Children with type 1 diabetes and their parents should be informed about strategies for the avoidance and management of hypoglycaemia. [B] Children with type 1 diabetes should be offered appropriate dietetic support to help minimise changes in body weight. [B] Adolescents with type 1 diabetes who have difficulty adhering to multiple daily injection regimens should be offered twice-daily injection regimens. [GPP] Pre-school and primary school children with type 1 diabetes should be offered the most appropriate individualised regimens to optimise their glycaemic control. [C] 4.3 Methods of delivering insulin Children with type 1 diabetes should be offered a choice of insulin delivery systems that take account of their insulin requirements and their personal preferences. [GPP] Children with type 1 diabetes using insulin injection regimens should be offered needles that are of an appropriate length for their age. [GPP] Continuous subcutaneous insulin infusion (or insulin pump therapy) is recommended as an option for people with type 1 diabetes provided that: [NICE TA] multiple-dose insulin therapy (including, where appropriate, the use of insulin glargine) has failed; and those receiving the treatment have the commitment and competence to use the therapy effectively. People for whom multiple-dose therapy has failed are considered to be those for whom it has been impossible to maintain an HbA 1c level no greater than 7.5% (or 6.5% in the presence of micro-albuminuria or adverse features of the metabolic syndrome) without disabling hypoglycaemia occurring, despite a high level of self care of their diabetes. Disabling hypoglycaemia, for the purpose of this guidance, means the repeated and unpredicted occurrence of hypoglycaemia requiring third- National Collaborating Centre for Women s and Children s Health Page 21 of 198

22 party assistance that results in continuing anxiety about recurrence and is associated with significant adverse effect on quality of life. [NICE TA] Continuous subcutaneous insulin infusion therapy should be initiated only by a trained specialist team, which should normally comprise a physician with a specialist interest in insulin pump therapy, a diabetes specialist nurse and a dietitian. [NICE TA] All individuals beginning continuous subcutaneous insulin infusion therapy should be provided with specific training in its use. Ongoing support from a specialist team should be available, particularly in the period immediately following the initiation of continuous subcutaneous insulin infusion. It is recommended that specialist teams should agree a common core of advice appropriate for continuous subcutaneous insulin infusion users. [NICE TA] Established users of continuous subcutaneous insulin infusion therapy should have their insulin management reviewed by their specialist team so that a decision can be made about whether a trial or a switch to multiple-dose insulin incorporating insulin glargine would be appropriate. [NICE TA] 4.4 Non-insulin agents (oral antidiabetic drugs) Children with type 1 diabetes should not be offered oral antidiabetic drugs combined with insulin because they may increase the risk of hypoglycaemia without the benefit of improving glycaemic control. [A] 4.5 Monitoring glycaemic control Children with type 1 diabetes and their parents should be informed that the optimal target for long-term glycaemic control is an HbA 1c level of less than 7.5% without an increase in hypoglycaemia. [A] Children with type 1 diabetes should be offered testing of their HbA 1c levels two to four times per year (unless there is concern for the child, in which case more frequent testing may be appropriate). [D] National Collaborating Centre for Women s and Children s Health Page 22 of 198

23 Current HbA 1c measurements should be made available for use and/or discussion in out-patient clinics. [D] Children with type 1 diabetes and their parents should be informed that low levels of HbA 1c can lead to increased risks of hypoglycaemia, and that high levels of HbA 1c can lead to increased risks of long-term microvascular complications. [A] Children with HbA 1c levels over 11% should be offered additional support from their diabetes care team to help them improve their glycaemic control because they are at increased risk of developing diabetic ketoacidosis and long-term complications. [B] Children with type 1 diabetes should be encouraged to use blood glucose measurements for short-term monitoring of glycaemic control because this reduces levels of glycated haemoglobin. Urine glucose monitoring is not recommended because it is less effective and is associated with lower patient satisfaction. [A] Children with type 1 diabetes and their parents should be informed that the optimal targets for short-term glycaemic control are a pre-prandial blood glucose level of 4 8 mmol/l and a post-prandial blood glucose level of less than 10 mmol/l. [D] Children using multiple daily injection regimens should be encouraged to perform frequent blood glucose monitoring as part of a continuing package of care that includes dietary management, continued education, and regular contact with the diabetes care team. [A] For example, home blood glucose testing four times per day (three pre-prandial measurements and one at bedtime) and an occasional weekly night-time measurement may be appropriate for children using multiple daily injection regimens. [D] Children using twice-daily injection regimens and their parents should be informed that less frequent blood glucose monitoring may be appropriate. For example, home blood glucose testing four times per day on 1 day per week, or two times per day on 2 days per week may be appropriate for children using twice-daily injection regimens. [D] National Collaborating Centre for Women s and Children s Health Page 23 of 198

24 Children with type 1 diabetes who are trying to optimise their glycaemic control and/or have intercurrent illness should be encouraged to measure their blood glucose levels more than four times per day. [GPP] Children with type 1 diabetes and their parents should be informed that using blood glucose monitors with memories in conjunction with diaries improves glycaemic control. Monitors are associated with increased patient satisfaction, whereas use of a diary reduces the frequency of hypoglycaemic episodes. [GPP] 4.6 Diet Children with type 1 diabetes and their parents should be informed that they have the same basic nutritional requirements as other children. Children s diets should provide sufficient energy and nutrients for optimal growth and development, with total daily energy intake being distributed as follows: carbohydrates > 50% protein 10 15% fat 30 35%. The consumption of five portions of fruit and vegetables per day is also recommended. [D] Children with type 1 diabetes should be encouraged to develop a good working knowledge of nutrition and how it affects their diabetes. [GPP] Children with type 1 diabetes should be encouraged to consider a bedtime snack. The nutritional composition and timing of all snacks should be discussed with the diabetes care team. [B] Children using multiple daily injection regimens should be offered extensive education in insulin and dietary management to enable them to adjust their insulin dose to reflect their carbohydrate intake as part of their diabetes care package. [C] 4.7 Exercise National Collaborating Centre for Women s and Children s Health Page 24 of 198

25 Children with type 1 diabetes should be encouraged to exercise on a regular basis because this reduces the risks of developing macrovascular disease in the long term. [A] Children with type 1 diabetes and their parents should be informed that they can participate in all forms of exercise provided that appropriate attention is given to changes in insulin and dietary management. [GPP] Children with type 1 diabetes wishing to participate in restricted sports (such as scuba diving) should be offered comprehensive advice by their diabetes care teams. Additional information may be available from local and/or national patient support groups and organisations. [GPP] Children with type 1 diabetes and their parents should be informed about the effects of exercise on blood glucose levels and about strategies for preventing exerciseinduced hypoglycaemia during and/or after physical activity. [C] Children with type 1 diabetes and their parents should be informed that changes in their daily exercise patterns may require insulin dose and/or carbohydrate intake to be altered. [A] Children with type 1 diabetes should be encouraged to monitor their blood glucose levels before and after exercise so that they can: [D] identify when changes in insulin or food intake are necessary learn the glycaemic response to different exercise conditions be aware of exercise-induced hypoglycaemia. Children with type 1 diabetes, their parents and other carers should be informed that additional carbohydrate should be consumed as appropriate to avoid hypoglycaemia, and that carbohydrate-based foods should be readily available during and after exercise. [D] National Collaborating Centre for Women s and Children s Health Page 25 of 198

26 Children with type 1 diabetes, their parents and other carers should be informed that exercise should be avoided if fasting blood glucose levels are greater than 14 mmol/l and ketosis is present. [D] Children with type 1 diabetes, their parents and other carers should be informed that exercise should be undertaken with caution if blood glucose levels are greater than 17 mmol/l, even if ketosis is not present. [D] Children with type 1 diabetes, their parents and other carers should be informed that additional carbohydrate should be consumed if blood glucose levels are less than 7 mmol/l. [D] 4.8 Alcohol, smoking and drugs Adolescents with type 1 diabetes should be informed about general health problems associated with alcohol consumption and the addictive nature of alcohol. [B] Adolescents with type 1 diabetes should be informed about the specific effects of alcohol consumption on glycaemic control, particularly the risk of (nocturnal) hypoglycaemia. [C] Adolescents with type 1 diabetes should be offered alcohol education packages. [GPP] Adolescents with type 1 diabetes who drink alcohol should be informed that they should: [GPP] drink in moderation eat food containing carbohydrate before and after drinking monitor their blood glucose levels regularly and aim to keep the levels within the recommended range by eating food containing carbohydrate. Children with type 1 diabetes and their parents should be informed about general health problems associated with smoking, and the risks of developing vascular complications in particular. [B] National Collaborating Centre for Women s and Children s Health Page 26 of 198

27 Children with type 1 diabetes should be encouraged not to start smoking. [GPP] Children with type 1 diabetes who do smoke should be offered support to help them stop. [GPP] Children with type 1 diabetes should be offered smoking education packages. [GPP] Children with type 1 diabetes and their parents should be informed about the general dangers of substance misuse and the specific effects on glycaemic control. [GPP] 4.9 Education Children with type 1 diabetes and their parents should be offered continuing and repeated opportunities to access information about type 1 diabetes. [GPP] Children with type 1 diabetes and their parents should be offered timely, accurate and consistent information and clear explanations, and these should be presented in ways that support informed decision-making in relation to care. [GPP] Children with type 1 diabetes and their parents should be offered opportunities to discuss particular issues and ask to questions at each clinic visit. [GPP] The method of delivering education will depend on the individual, and should be appropriate for the child s age, maturity and wishes. [GPP] Particular care should be given to communication and the provision of information when children with type 1 diabetes and/or their parents have special needs, such as those associated with physical and sensory disabilities and difficulties in speaking or reading English. [GPP] 5 Complications and associated conditions 5.1 Hypoglycaemia Children with type 1 diabetes, their parents and other carers should be informed that they should always have access to an immediate source of carbohydrate National Collaborating Centre for Women s and Children s Health Page 27 of 198

28 (glucose or sucrose) and blood glucose monitoring equipment for immediate confirmation and safe management of hypoglycaemia. [D] Children, parents, schoolteachers and other carers should be offered education on the recognition and management of hypoglycaemia. [D] Children with type 1 diabetes should be encouraged to wear or carry something that identifies them as having type 1 diabetes. [D] Children with mild-moderate hypoglycaemia should be treated as follows: [GPP] take immediate action the first line of treatment should be the consumption of rapidly absorbed simple carbohydrate (for example, 10 20g carbohydrate given by mouth) the carbohydrate should raise blood glucose levels within 5 15 minutes examples of 10g carbohydrate are: 55ml of a high-energy glucose drink 100ml of cola 150ml of lemonade 100ml of unsweetened fruit juice 200ml of milk 23g oral ampoule of Hypostop three glucose tablets two teaspoons of sugar or three sugar lumps a fun-size chocolate bar National Collaborating Centre for Women s and Children s Health Page 28 of 198

29 carbohydrate given in liquid form may be taken more easily it may be appropriate to give small amounts of rapidly absorbed simple carbohydrate frequently because hypoglycaemia may cause vomiting as symptoms improve or normoglycaemia is restored additional complex long-acting carbohydrate should be given orally to maintain blood glucose levels examples of complex long-acting carbohydrate are: one to two digestive biscuits a cereal bar bread and butter or a sandwich a bowl of cereal a piece of fruit blood glucose levels should be rechecked within 15 minutes. Children with severe hypoglycaemia should be treated as follows: [GPP] intravenous glucose should be used if possible outside hospital, or where intravenous access is not practicable, intramuscular glucagon should be the first line of treatment children over 8 years old (or body weight over 25 kg) should be given 1 mg of glucagon children aged 8 years or less (or body weight under 25 kg) should be given 500 micrograms of glucagon blood glucose levels should respond within 10 minutes National Collaborating Centre for Women s and Children s Health Page 29 of 198

30 children who are sufficiently awake should be given oral carbohydrate to prevent them relapsing into hypoglycaemia some children may continue to have reduced consciousness for several hours after a severe hypoglycaemic episode, and repeat blood glucose measurements will be required to determine whether further glucose is necessary medical assistance should be sought for children whose blood glucose levels fail to respond and those in whom symptoms persist for more than 10 minutes. Parents, school teachers and other carers should be informed that they should have access to glucagon for subcutaneous or intramuscular use in an emergency, especially when there is a high risk of severe hypoglycaemia. [D] Parents, school teachers and other carers should be offered education on the administration of glucagon. [D] Children with type 1 diabetes and their parents should be informed that when alcohol causes or contributes to the development of hypoglycaemia, glucagon may be ineffective in treating the hypoglycaemia and intravenous glucose will be required. [GPP] 5.2 Diabetic ketoacidosis Children with diabetic ketoacidosis should be treated according to the guidelines published jointly by Diabetes UK and the British Society for Paediatric Endocrinology and Diabetes. [D] Children with diabetic ketoacidosis should be managed initially in a highdependency unit or in a high-dependency bed on a children s ward. [D] Children with deteriorating consciousness or suspected cerebral oedema and those who are not responding appropriately to treatment should be managed in a paediatric intensive care unit. [D] Infants with diabetic ketoacidosis should be managed in a paediatric intensive care unit. [D] National Collaborating Centre for Women s and Children s Health Page 30 of 198

31 Children with a ph of less than 7.3, but who are clinically well (no tachycardia, vomiting, drowsiness, abdominal pain or breathlessness) and less than 5% dehydrated, may respond appropriately to oral rehydration, frequent subcutaneous insulin injections and monitoring of blood glucose. [D] 5.3 Surgery Children with type 1 diabetes should only be offered surgery in centres with dedicated paediatric facilities for the care of children with diabetes. [D] Careful liaison between surgical, anaesthetic and diabetes care teams should occur before children with type 1 diabetes are admitted to hospital for elective surgery, and as soon as possible after admission for emergency surgery. [D] All centres caring for children with type 1 diabetes should have written protocols to ensure the safe management of children during surgery. The protocols should be agreed between surgical, anaesthetic, and paediatric staff. [D] 5.4 Intercurrent illness Children with type 1 diabetes and their parents should be offered clear guidance and protocols ( sick day rules ) for the management of type 1 diabetes during intercurrent illness. [GPP] 5.5 Screening for complications and associated conditions Children with type 1 diabetes should be offered screening for: coeliac disease at diagnosis [C] and at least every 3 years thereafter [GPP] thyroid disease at diagnosis and annually thereafter [C] retinopathy annually from the of age 12 years [C] micro-albuminuria annually from the age of 12 years [C] blood pressure annually from the age of 12 years. [C] National Collaborating Centre for Women s and Children s Health Page 31 of 198

32 Routine screening for elevated blood lipid levels and/or neurological function is not recommended for children with type 1 diabetes. [C] Children with type 1 diabetes should be offered: [GPP] routine dental examinations every 6 months foot care reviews annually lipohypertrophy screening annually. Children with type 1 diabetes should have their height and weight measured and plotted on an appropriate growth chart at each clinic visit. [GPP] The following rare complications should be considered at clinic visits: [GPP] juvenile cataracts necrobiosis lipoidica Addison s disease. 6 Psychological and social issues 6.1 Behavioural problems in children with type 1 diabetes Diabetes care teams should be aware that children with type 1 diabetes have a greater risk of behavioural problems than other children. [C] 6.2 Anxiety and depression Diabetes care teams should be aware that children with type 1 diabetes may develop anxiety and/or depression, particularly when difficulties in selfmanagement arise in adolescents and children with long duration of diabetes. [B] Children with type 1 diabetes who have persistently poor glycaemic control should be offered screening for anxiety and depression. [C] National Collaborating Centre for Women s and Children s Health Page 32 of 198

33 Diabetes care teams should be able to detect anxiety and depression in children with type 1 diabetes. [GPP] Children with type 1 diabetes and suspected anxiety or depression should be referred efficiently to child mental health professionals. [GPP] 6.3 Eating disorders Diabetes care teams should be aware that children with type 1 diabetes have an increased risk of eating disorders. [C] Diabetes care teams should be aware that children with type 1 diabetes who have eating disorders may have associated problems of persistent hyperglycaemia, recurrent hypoglycaemia, and symptoms associated with gastric paresis. [C] If an eating disorder is identified by the diabetes care team the child should be referred to a child mental health professional for joint management. [GPP] 6.4 Cognitive disorders Parents of pre-school children with type 1 diabetes should be informed that persistent hypoglycaemia, particularly in association with seizures, is associated with a small but definite risk of long-term neurocognitive dysfunction. [C] Diabetes care teams should consider referring children with type 1 diabetes who have frequent hypoglycaemia and/or recurrent seizures for assessment of cognitive function, particularly if these occur at a young age. [B] 6.5 Behavioural and conduct disorders Children with type 1 diabetes who have behavioural and conduct disorders and their families should be offered access to appropriate mental health professionals. [C] 6.6 Non-adherence Non-adherence to therapy should be considered in children with type 1 diabetes who have poor glycaemic control, especially in adolescence. [B] National Collaborating Centre for Women s and Children s Health Page 33 of 198

34 Non-adherence to therapy should be considered in children with established type 1 diabetes who present with diabetic ketoacidosis, especially if the diabetic ketoacidosis is recurrent. [B] Adolescents with brittle diabetes (that is, those who present with frequent episodes of diabetic ketoacidosis over a relatively short time) should be referred for mental health assessment. [B] The issue of non-adherence to therapy should be raised with children and their parents in a sensitive manner. [GPP] 6.7 Psychosocial support Diabetes care teams should be aware that poor psychosocial support has a negative impact on a variety of outcomes of type 1 diabetes in children, including glycaemic control and self-esteem. [C] Children with type 1 diabetes, especially adolescents using multiple daily injection regimens, should be offered structured behavioural intervention strategies because these may improve psychological well-being and glycaemic control. [A] Adolescents with type 1 diabetes should be offered specific support strategies, such as mentoring and problem-solving directed self-monitoring of blood glucose levels to improve their self-esteem and glycaemic control. [A] Families of children with type 1 diabetes should be offered specific support strategies to reduce diabetes-related conflict between family members. [A] Diabetes care teams should have appropriate access to mental health professionals to support them in the assessment of psychological dysfunction and the delivery of psychosocial support. [C] 6.8 Adolescence Diabetes care teams should be aware that adolescence can be a period of worsening glycaemic control and non-adherence to therapy. [B] National Collaborating Centre for Women s and Children s Health Page 34 of 198

35 7 Continuity of care 7.1 Communication between organisations Health professionals who care for children with type 1 diabetes should be aware of local and/or national patient support groups and organisations, and where appropriate they should participate in their organisation. [GPP] Diabetes care teams should liaise regularly with school staff involved in supervising children with type 1 diabetes. [GPP] Teaching staff should be aware of the potential effects of type 1 diabetes on cognitive function and educational attainment. [GPP] 7.2 Transition from paediatric to adult care Adolescents and young adults with type 1 diabetes should be encouraged to attend clinics on a regular basis (3 4 times per year) because regular attendance is associated with good glycaemic control. [D] Adolescents with type 1 diabetes should be allowed sufficient time to familiarise themselves with the practicalities of the transition from paediatric to adult services because this has been shown to improve clinic attendance. [GPP] Specific protocols should be agreed for transferring adolescents with type 1 diabetes from paediatric to adult services. [GPP] The age of transfer to the adult service should vary according to the individual s physical development and emotional maturity, and according to local circumstances. [GPP] Transition from the paediatric service should occur at a time of relative stability in the individual s health and should be coordinated with other life transitions. [D] Paediatric diabetes care teams should organise age-banded clinics for adolescents and young adults jointly with their adult specialty colleagues. [D] National Collaborating Centre for Women s and Children s Health Page 35 of 198