The delivery of ambulatory diabetes care to children and adolescents with diabetes

This section of the ISPAD Consensus Guidelines 2006–2008 recommends structures for diabetes ambulatory care and stresses the importance of the structures and processes of care that best allow periodic determinations of clinical outcomes with the goal of defining structures and processes that will improve these outcomes. Cost of care is an important part in the evaluation of diabetes care and is addressed in this guideline, although cost-effectiveness of care in pediatric diabetes is an area in which there are insufficient data and that requires additional study. The importance of other settings for diabetes care, especially schools and camps, is also addressed. Specific recommendations for the medical aspects of diabetes care are presented in other sections of the guidelines; those for insulin treatment (1), assessment and monitoring of glycemic control (2), nutritional management (3), diabetes education (4), and microvascular and macrovascular complications (5) are especially recommended in association with this Ambulatory Care Guideline. Diabetes is primarily managed in the outpatient/ambulatory setting. The importance of regular, ambulatory ongoing diabetes care assessment for youth with diabetes is essential to maintaining optimal glucose control and to monitor for risk factors for acute and chronic complications. The components of medical care include structure, processes, and outcomes (6). Examination and reexamination of these components will allow for continually improving the quality of care delivered to children with diabetes using the tools and resources available. As a chronic disorder managed over many years, it should be anticipated that approaches to all aspects of medical care will change over time. Additional guidelines from other organizations may be helpful for review (7–11). The Specialist Multidisciplinary Diabetes Care Team for children and adolescents should consist of Pediatrician specializing in diabetes or endocrinology (or physician with a special interest in childhood and adolescent diabetes). Diabetes nurse specialist or diabetes nurse educator. Dietician (or nutritionist) Pediatric social worker with training in childhood diabetes and chronic illness and/or psychologist trained in pediatrics and with knowledge of childhood diabetes and chronic illness (12). The team should recognize the family and child as an integral part of the care team. Their importance as members of the child's care team should be emphasized from the day of diagnosis The multidisciplinary team is very unlikely to be available in areas of low population density and where childhood diabetes rarely occurs. In these circumstances, care is likely to be provided by a locally based pediatrician/physician. Nevertheless, these practitioners should have ready access to facilities and advice provided by the Diabetes Care Team in regional centers of excellence (13–15) (C, E). General aims of the Diabetes Care Team should be to provide Expert practical guidance and skill training. Consistent repeated diabetes education and self-management training. Up-to-date advice on insulin management, daily glucose monitoring techniques, and recommended monitoring for comorbidities, complication risk factors, and complications. Thoughtful introduction of new therapies and technologies as diabetes management evolves. An understanding of, and support for, the psychosocial needs of the family, aiding in the child's and family's adjustment to, and care of, diabetes. Current information on research in diabetes to patients and regional physicians. Ongoing contributions to advancing clinical practice through development and evaluation of new technologies and the most optimal application of new and existing technology in clinical practice. Diabetes is a condition requiring skilled self-management in the home and local environment (E). The Diabetes Care Team should have the resources to develop strong links, clear communication, and common working practices with The child and family at home. The young person at school or college/university. Primary health care providers. Other pediatricians and health care providers in areas of low population density/low diabetes prevalence. The organization of the Diabetes Care Team, its size, and its location will depend on geographical and demographic characteristics. The teams from district or regional centers might organize outreach clinics when there are difficulties for children and families traveling to the regional centers if adequate reimbursement for this service is available (14, 15) (C). In some areas, two-way telecommunication utilizing video–computer technology and local medical staff to facilitate the telemedicine visit allows for more efficient and effective distant care (13) (A, C). In all areas, telecommunication directly with the patient and/or their family has also shown benefit. Increasingly, sophisticated computer interfacing with blood glucose (BG) meters, continuous glucose sensors, insulin pumps, and insulin pens allows patients to interact directly with the Diabetes Team between visits, which may result in improved diabetes management (16–18). Appropriate reimbursement must be available for these non-face-to-face services for Diabetes Care Teams to utilize these newer technologies in a sustainable fashion (13) (B, E). Generally accepted good clinical practice for the successful management of children and adolescents with diabetes includes the following: Easy access (24 h a day) for rapid diagnosis and initiation of treatment with availability of accepted written protocols for management of diabetic ketoacidosis (DKA) and other presentations of childhood diabetes (19, 20). Provision of practical care guidance at diagnosis including the education required to allow the family to feel confident in providing diabetes care at home with a basic understanding of the pathophysiology of diabetes and its treatment. Psychosocial support for the child and family. Written materials in a format and language the family can best understand. Domiciliary/outpatient/ambulatory management of children at the time of diagnosis is possible in some centers with appropriate resources but can only be recommended when members of the Diabetes Care Team are experienced in the outpatient initiation of insulin therapy and adequate reimbursement for Diabetes Team Care is available for extensive outpatient diabetes management and education. Backup hospitalization must also be available in case of metabolic deterioration. The importance of providing 'a good start' with confident, clear, positive messages, support, and advice cannot be overemphasized (E). Frequent contact with the Diabetes Care Team is necessary to help manage the changing requirements of diabetes in its early phases. Contact may be by frequent clinic appointments, home visits, and telephone or other methods of communication and usually consists of a combination of these methods. It is common practice for the diabetes care of children and adolescents to be reviewed in outpatient clinics at least three or four times per year or more often if particular difficulties in managing diabetes are recognized or the child is very young. Outpatient visits with members of the Diabetes Care Team should include assessment of General health and well-being. Height, weight and body mass index (BMI) (entered and tracked on appropriate growth charts). Blood pressure with reference to age-appropriate normal levels. Physical examination to include thyroid, cardiac, abdominal (for hepatomegaly), and skin [especially for injection and self blood glucose monitoring (SBGM) sites]. Insulin types, doses, and injection/insulin delivery devices. Insulin adjustments for glucose value, food, and exercise. Glycemic control, including hemoglobin A1c (HbA1c) and analysis of home BG records. Hypoglycemia history, including determination of hypoglycemia awareness. Intercurrent health problems (infections, disabilities, enuresis/nocturia, diabetes-related emergency and hospital/emergency visits, and other pediatric and developmental problems). Changes in developmental performance, education (particularly school absences/problems), leisure, and sport activities and psychosocial progress. Symptoms relevant to associated comorbid conditions, for example hypothyroidism and celiac disease. New health conditions, including disordered eating behavior. All current medications. Diabetes-specific knowledge appropriate to the age of the patient, including the family's knowledge of sick day management and hypoglycemia, including avoidance, identification, and treatment. The outcome of each visit should include An individualized plan of diabetes care incorporating the particular needs of each child/ adolescent and family designed to optimize the child's diabetes outcome. A written copy of the plan provided to the family at the conclusion of the visit outlining any changes made to the child's diabetes management as well as indicating the past successes of the family. It is good clinical practice to organize an ANNUAL REVIEW of care to include Physical development and well-being with particular emphasis on Growth. Pubertal development. Associated conditions (goiter/thyroid disease, celiac disease, other autoimmune conditions, skin or foot problems). Additional new pertinent family history (new diabetes or other endocrine diagnoses, cardiovascular events/diagnosis). Review of diabetes care goals. Assessment of the family's and child's adjustment to diabetes and age-appropriate transfer of care to the child/adolescent. Determination of barriers to successful diabetes management, including needle fears. Assessment if diabetes care plan is optimally intensified, taking the above assessments into consideration. Review by a nutritionist of nutritional plan and dietary management. Review of physical activity and adjustments made in therapy for activity. Assessment by a diabetes nurse educator of diabetes-specific knowledge appropriate to the age of the patient as well as the family's diabetes knowledge. Assessment for depression and disordered eating in children > 10 yr of age. Reinforcement of age-appropriate information on driving, employment, smoking, sex, pregnancy, drugs, and alcohol. Review of current medicines, supplements (including complementary and alternative therapies). Assessment of understanding of risks for complications and care plans to minimize these risks and provide age-appropriate information. Complications risk screening in those from 11 yr with greater than 2 yr of diabetes duration, including blood pressure review and microalbumin measurement and ophthalmologic evaluation. Lipid screening at puberty (12 yr) and then every 5 yr if within the acceptable risk range or annually if not within this range [further details on complications screening are available in (16)]. If risk factors for complications are found, additional evaluation and treatment may be indicated (5). Assessment for co-morbidities, especially including hypothyroidism (usually with an annual TSH) and celiac disease (usually every two years; more often if symptoms are present). Education concerning the need for routine dental care (unattended dental caries, periodontal disease, gingivitis). The patient and his/her family should always be complimented for the blood testing they have been able to do at home, and the record should never be used to criticize the child or family for failing to reach glucose targets. The records are best used as a tool to identify patterns and trends, identify and solve problems, and teach improved diabetes self-management skills. Many models of care exist that aim to improve communication of home BG records, insulin dosing, dietary, and exercise information between the child, adolescent/family and the specialist diabetes teams. Examples of useful clinical management tools include Personal handwritten records, monitoring diaries. Electronic personal data records. BG meters with memory capacity (± computer/ telephone links). Insulin pens and pumps with memory of insulin doses/pump functions ±BG records incorporated into the pump memory (± computer links). Continuous glucose sensors with memory capacity (± computer links). The ability to download data from BG meters, insulin pens, pumps, and continuous glucose sensing devices to view the actual data from the child/ adolescent's home care at each clinic visit provides very valuable insight into home management. These data often allow the diabetes team to identify areas where adjustments need to be made in diabetes care plans and, more importantly, to identify areas where the young patient is in need of additional help or supervision from the family or a supportive adult. These data also can be valuable teaching tools to demonstrate the effect of daily behaviors and diabetes care behaviors on glucose outcomes and can be used to encourage beneficial changes in behavior. It should be emphasized that BG meter memories and clinic downloads of the monitor data are not substitutes for regular review at home of BG readings by the patient and his/ her family. Increasingly, these devices may be downloaded onto the family's home computer or the manufacturer's website for family review and for transmission electronically to the Diabetes Care Team when families require advice on management. This allows more frequent contact between the family and the Diabetes Care Team for electronic or phone consultation. While this may lead to improved diabetes management, diabetes teams will need to determine whether adjustments in staffing requirements will be needed to accommodate this new technology. Additionally, some mechanism to reimburse for these services, or provide adequate staff to provide these services, will also need to be in place for these services to become readily available (E). Regular Dental Care is important, as caries in adults with diabetes may be comparable to the normal population, while gingivitis and paradontitis is more common (21, 22). Children and adolescents with higher HbA1c were in one study found to have higher glucose levels in the saliva and more caries (23). The transition to adult care is inevitable. This transition occurs at different ages in differing care settings, and there is no age when transition is smoothest. This transition is difficult for many youth, and lack of consistent care may follow transition in 30–40% of patients. Even in those who remain in care, reports of metabolic control in the 2 yr after transition vary (24). Discussion about transition to another care team or provider at several visits before transition has been found to help young people prepare for transition. In addition, providing counseling on how care and care practices may differ in adult clinics has been suggested to be helpful to teens (25) (B, E). A planned transition to adult diabetes care improves outcomes and helps to ensure continuity of care during this critical time (26, 27) (B). The age of transfer to an adult clinic varies according to individual and local circumstances and traditions (28–30) (E). A combined adolescent/young adult clinic with both pediatric and adult diabetes specialists may be the optimal model of transition to adult care (31, 32) (E). Globalization and migration are great challenges to the health care systems of the developed and, sometimes, the to treatment that the care of children as well as children of may be to the diabetes team and will diabetes care in these of these barriers is necessary to optimize care, and to these barriers requires communication, and the of all team and family the and, sometimes, actual access to health care by and families may be different than that of the of these and requires and knowledge of the family's social In with in access to diabetes care, it is to that care requires not only to medical needs but also to needs of support required by and families to access and optimally utilize medical must always be used when If a is not a is the child or other family should only be used as an if no other is available. tool must be developed including a of tools for communication, and and for or and about diabetes. in care is an essential part of diabetes of a family's and can be critical to providing care, for example and of a chronic disease may or the family from providing or necessary daily diabetes treatment quality data management, and information services Increasingly, it is that diabetes care centers need methods to the quality of the diabetes services they provide and the outcomes of management. improving outcomes of care is essential to the health of children with diabetes. to be can be into of care outcomes and outcomes. in processes of care in outcomes. The of changes in the of care on outcomes is well in pediatric diabetes. relevant outcomes is essential to the quality from quality that these can recommended processes of care as of HbA1c determinations and insulin as well as lead to in guidelines for and microalbumin screening the guidelines for microalbumin screening to of treatment with an or therapy has been shown to this with anticipated in risk for of early the to and improve glycemic control with the anticipated in of to Regular screening may also identify those requiring ophthalmologic treatment to The of quality on HbA1c levels is clear (B). the of glycemic control required to optimally the risk of complications is accepted to be an HbA1c of the study has shown that most centers are to a HbA1c of, in the of especially in adolescents outcome data required for assessment of quality more computer records must be used to the necessary quality information. at to is required to determine or over time changes to be made when data may be with a or including clinic emergency visits or and clinic data and computer The for Children of the is an example of a that most important outcome This may be used for or of clinic data for 2 diabetes in children and or A medical record that includes outcome data from which the outcomes can be of of both processes of care and outcomes of diabetes care important to pediatric diabetes services data management and analysis are required to outcome data for quality determination of the of the required to provide care, the education and the Diabetes Care of recommended care outcome of care include the of the diabetes care available to the team and including resources and for patient care and and of and ongoing diabetes education current and of care including screening for risks for complications and of complications and of care also include patient including of diabetes care visits, of and and weight and of diabetes with > of with > factors for complications HbA1c as well as by age. of of levels. of ophthalmologic of acute complications of of of emergency visits and of other autoimmune disease and and family and family with care centers can their outcomes to Other pediatric diabetes of diabetes centers or study that have to and as the the Diabetes and the for diabetes study have provided helpful outcome data from pediatric diabetes have also been but consistent data from individual centers are available than those of study have of some processes of care that may but additional are needed to best care these data will allow pediatric diabetes care teams to identify some processes of care that result in in improving quality of care for children the The goal is to provide care that in normal growth and a and possible risk of acute and complications. This is best by children and families become in self management, remain childhood and into adults (E). Children of their in Diabetes care in school is an important part of their diabetes management The school should never or a medical treatment plan that is by the diabetes team to be optimal for the The child has the to adult support for diabetes care from school during school school when at school from and should at school (E). must be trained to provide or all diabetes care by the diabetes team (E). must be supportive of providing diabetes care and encourage diabetes management during school (E). The treatment required may include Insulin by injection or with an insulin BG in young children and children and adolescents they are of the and treatment for hypoglycemia, both and Even the of teens are with diabetes management at all with diabetes may require with management of all school should be trained to recognize hypoglycemia and when to for or how to hypoglycemia (E). A found that of children in school experienced an of hypoglycemia requiring from school with a of during one school year diabetes and organizations provide guidelines for school care and recommendations and to school and families to diabetes care in schools The Diabetes as part of their at has presentations especially for school which may be downloaded from their a with information is anticipated to be available as The Diabetes also materials available to school and another example of for can be found at and that school can become with the medical care children with diabetes require Many local and diabetes organizations manage and day for children with and it is that children diabetes annually Diabetes are usually by and trained in the management of children with diabetes. 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These are valuable and should be reviewed by medical to ensure to specializing in children with diabetes should have staff trained in the management of children with diabetes insulin to the needs of the of insulin adjustments for the levels of activity that are at camps, An understanding of how to settings and insulin pumps if they are used at the The ability to or blood and have adequate facilities to All staff trained in the of hypoglycemia and its staff trained in the and treatment of early and when to a medical should be least one staff with knowledge of medical of and the of insulin for of A plan to a of BG levels and insulin for each It is practice to provide a or with a copy of this at the of provide some education in diabetes management in more by taking of by and of to or in a to diabetes care and outcomes. staff should recognize that the goal of is to provide an for each child in a The Diabetes Care Team may be in to organize support education insulin pump Discussion activity visits, camps, of of care is important in to determine appropriate recommendations for care and in health this data are needed in pediatric including outcomes data as indicated of different insulin and their health outcomes. of glucose monitoring techniques, including and of monitoring and their on health outcomes. of providing a diabetes team. on the of diabetes health care complications in emergency visits and/or to and complications of microvascular and macrovascular disease as well as the for patients and family of diabetes care have in the past 10 yr with the introduction of of insulin pumps, and recommendations for of BG If continuous glucose technology as it this will also to the of daily Personal for diabetes care vary the with in some and for by the or health in of the of for care, information about cost-effectiveness is required to health care and health care systems are to the of diabetes or health systems are or have of newer insulin and newer technologies requiring those these technologies to to of the rapid and are to times as as regular and both and have been shown to the of and The need to be to determine if the in taking and into available information allow some assessment of the outcome of current insulin using BG monitoring in an with of a over the of an adolescent These reports that therapy and, more insulin pump therapy outcome with a beneficial injection therapy using an daily injection with as the insulin insulin pump (B). are in to to the of continuous glucose to in systems in improving health outcomes in youth with diabetes (C). It has been well that in diabetes there is very information on the of diabetes in children and especially for those with 2 diabetes. information is critical when the of disease and the of diabetes and control in this A study in that with the population, the medical for children with yr times These health care in health care, outpatient and care, and The additional per person with diabetes in children Additional data on of diabetes care in children with both and 2 diabetes and approaches to care are In addition, data on the effect of different care models and practices on outcomes are These data are essential to appropriate in health care of diabetes The child or adolescent with diabetes and their family should be for, from the by members of a team of all of should have and understanding of both diabetes and including child and adolescent development (E). The team should provide current care with the of current technology to available resources and the individual The diabetes care team should recognize the family and child as an integral part of the care team. Their importance as members of the child's care team should be emphasized from the day of diagnosis The multidisciplinary team is very unlikely to be available in areas of low population density and where childhood diabetes rarely occurs. In these circumstances, care is likely to be provided by a locally based pediatrician/physician. These practitioners should have ready access to facilities and advice provided by the Diabetes Care Team in regional centers of excellence (13–15) (C, E). The Diabetes Care Team should provide medical Expert ambulatory care of diabetes and associated pediatric Thoughtful introduction of new therapies and technologies as diabetes management evolves. Expert advice on to diabetes as for care at camps, and other where children with diabetes require care when from home. for risk for and comorbid telephone or other support h a day to patients and families and support to and health care providing diabetes care in areas of low population density where access to a Diabetes Care Team is not The of diabetes care should A care visit every for a of diabetes management and review of home management records An annual visit with greater to dietary and psychosocial needs as well as complication screening and screening for A planned transition to adult diabetes care which improves outcomes and helps to ensure continuity of care during this critical time (26, 27) (B). The age of transfer to an adult clinic varies according to individual and local circumstances to children and children of to provide communication, and for or and about diabetes in care Care should be by electronic or tools as clinic information to each child's and to develop clinic to to regional and for of care (E). of The Diabetes Care Team should monitor outcomes to identify areas of and of care to improve outcomes including metabolic and other health outcomes microvascular and macrovascular with care, and and to identify and health care (E). The Team should their outcomes to regional and for of care (E). The goal is to provide care that in normal growth and a and possible risk of acute and complications. This is best by children and families become in self management, remain childhood and and allow for children to develop into adults (E). Cost of care and treatment to outcomes data over the child's are critical to providing optimal care to children with diabetes. A should be to and providing these data to, and with the help of, and health care