Diabetes Spectrum
Volume 10 Number 4, 1997, Pages 259-267

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The Message of the DCCT for Children and Adolescents

Stuart J. Brink, MD, and Kathleen Moltz, MD

  In Brief

The DCCT proved the association among glycemia, glycohemoglobin, and long-term complications in adults and teenagers with type 1 diabetes. Individually designed target glucose goals were achieved through teamwork involving patients, families, and a multidisciplinary team of nurses, dietitians, diabetologists, and psychosocial specialists. Translating this success into pediatric practice requires more frequent contact and office visits; multiple daily insulin doses or insulin pumps; and avoidance of hypoglycemia, as well as meal plan flexibility and knowledge of the developmentally appropriate needs of young patients.

The DCCT

The Diabetes Control and Complications Trial (DCCT)1 tested the "glucose hypothesis" and established conclusively the association between higher glucose levels and long-term complications (retinopathy, nephropathy, and neuropathy). In contrast to the conventionally treated group, subjects who were intensively treated had individualized glucose targets, frequent adjustments based on ongoing capillary blood glucose monitoring, and a team approach that focused on the person with diabetes as the prime initiator of ambulatory self-care. The philosophy of care developed for and by the intensively treated patients was constantly adjusted toward reaching normal or near-normal glycemic goals, while keeping in mind the "prime directive" of avoiding or minimizing severe episodes of hypoglycemia. Office/ambulatory visits with a member of a multidisciplinary diabetes treatment team occurred monthly. Weekly telephone contact between visits was common if target goals were not satisfied. Flexible algorithms for food, insulin, and activity were created and evaluated using home glucose monitoring results and monthly glycohemoglobin test results.

Teaching emphasized a proactive (preventive) approach to blood glucose fluctuations with constant re-adjustment (reactive approach) to counterbalance any high or low glucose readings (Table 1). The focal person on each multidisciplinary team was the diabetes nurse educator/clinician, with close collaboration with the dietitian, diabetologist, exercise physiologist, psychologist, social worker, and psychiatrist as appropriate. Target glucose goals were adjusted upwards if hypoglycemia could not be prevented. This was especially important in those who had recurring episodes of severe hypoglycemia.

Such intensive care was expensive2 but produced dramatic reduction of retinopathy, nephropathy, and neuropathy by 47–76%. There was no glycemic threshold for the development of these complications3 (al-though other studies have suggested such a threshold4), and there was a clear and increasing risk related to higher glycohemoglobin values.5

Adolescents made up 15% of the study cohort, but no prepubertal patients were included. The data from the adolescent cohort (13–17 years of age at entry, n = 125 in the primary prevention group and n = 90 in the secondary prevention group)6 showed the same degree of improvement and the same relationship between the outcome measures of retinopathy, nephropathy, and neuropathy.

However, as has been known for many years clinically and anecdotally,7-11 the diabetes of adolescents was more difficult to control, and changes were more difficult to sustain, than in the adult cohort. Intensively and conventionally treated adolescents started and ended with significantly higher mean glucose levels and glycohemoglobins than did the comparable adult groups. Adolescents also gained slightly more weight and had more episodes of both severe hypoglycemia and ketoacidosis than did the adult comparison groups. The DCCT did not address this issue, although other studies of children and adolescents have not documented consistent increased frequency or severity of hypoglycemia.12-14

Table 1. Type 1 Diabetes Decision Options Based on Blood Glucose Testing Results

  Proactive Decisions Reactive Decisions
Insulin Insulin algorithms to adjust insulins and prevent hyperglycemia or hypoglycemia (e.g., take less morning regular insulin when gym activities occur after breakfast.) Insulin algorithms to respond to immediate high or low glucose readings and correct them now (e.g., a high pre-dinner value suggests adding additional regular insulin now so that blood glucose does not remain high high for so long.)
Meal planning Adjusting food and snack intake in anticipation of other changes to prevent glycemic perturbations (e.g., on days when studying instead of playing soccer, take a smaller snack.) Adjusting food and snack intake based on blood glusose   reading of the moment (e.g., have ice cream at bedtime snack if bedtime blood glucose reading is normal and you have just come home from a dance.
Activity adjustments Compensate with insulin or food before the changed activity. Compensate with insulin or food based on current blood   glucose reading.
Sick-day guidelines Learn sick-day guidelines and compensate with extra insulin and more salty fluids if glucose readings are elevated and much  more insulin if ketonuria occurs to prevent ketoacidosis and dehydration. Know how to respond to illnesses with lowered insulin only when blood glucose readings are low.
Adapted from Brink SJ, New England Diabetes and Endocrinology Center, Waltham, Mass.

The application of DCCT results to children, adolescents, and young adults with type 1 diabetes remains an unmet challenge in most of the world, including in most of the United States. Many physicians do not have the training or the time to spend with youngsters with type 1 diabetes to achieve these results. Many pediatric and adolescent patients with diabetes do not seek consultation from diabetologists, let alone pediatric and adolescent diabetes specialists.

Barriers to application of the DCCT in children include 1) the added staff resources required to form a multidisciplinary team, 2) the cost of office visits, 3) the need for intensive home monitoring, and 4) the training/retraining of health professionals that must take place to encourage the establishment of target glucose goals for young patients even when they are not participating in a research study, 5) facing other medical problems, and 6) experiencing significant family/psychosocial difficulties. Moreover, we must determine a method of setting such target goals in a safe manner, so that hypoglycemia is decreased.

One of the main differences between intensively treated patients in the DCCT and those in our communities is that the DCCT investigators adopted a common treatment philosophy8,15-18 and identified mutually agreed-upon preprandial and postprandial blood glucose goals, which were continually adjusted according to the needs of each patient. Such individualized blood glucose goals require flexible, multidose insulin algorithms (similar to Berger and Mühlhauser’s "Structured Diabetes Therapy"19) and the availability of glycohemoglobin measurement every 1–2 months to provide feedback for those in need of improvement.

Many professionals have concerns about applying the results of the DCCT to preschool-aged children, who often have hypoglycemia un-awareness with unique safety issues,9,20 and to prepubertal school-aged children, who were not included in the DCCT. Nevertheless, our advice at the New England Diabetes and Endocrinology Center (NEDEC) is to set goals for safe improvement of glucose control without excessive hypoglycemia in all children with diabetes based on our experience with more than 3,000 children and teens over the past 20 years. This advice is based on pediatric studies in Berlin,3 Pittsburgh,21 Sydney,22 and Linkö-ping,23 as well as our experience in the DCCT. Our general strategies and specific, age-based applications are outlined in the following sections.

Strategy 1: Flexible Algorithms for Insulin

The DCCT applied a multidose insulin delivery system using either insulin pumps for subcutaneous injection or multiple daily insulin injections. This allowed greater flexibility for patients and a greater ability to determine changes required for expected or unexpected changes in food, stress, illness, or activity. It also forced greater reliance on the more predictable fast-acting insulins, because insulin pumps only use regular insulins and because multiple daily injection (MDI) programs focus primarily on changes in regular insulin several times each day.

The DCCT also taught investigators to promote individual flexibility and to deliver insulin in a creative fashion that was not always standard but that seemed to work based on patients’ lifestyle choices of the moment. Experimentation with different combinations of regular and other types of insulin were tried frequently and adapted to meet day-to-day needs based on blood glucose results. This replaced efforts to "force" food to work at times when insulin was "supposed" to be effective.

Rather than arrange food and snacks to match how insulin is absorbed, the option that we have chosen at NEDEC follows what we learned in the DCCT. Few patients maintain consistency in the timing and amounts of food, so we adapt insulin doses to counterbalance food changes.

In some countries, such as Italy or some Latin American countries where the biggest meal is around 1:00 to 3:00 p.m. with a relatively smaller or equal-sized meal around 6:00 to 8:00 p.m., our approach would be to provide rapid-acting insulin (previously human regular insulin and more recently faster-acting insulin analogs) immediately before each meal and an intermediate-acting or longer-acting insulin in the evening (lente usually, but sometimes NPH or ultralente.)

Exactly how such individual insulins are absorbed is highly variable from day to day, and reliance on the short-acting insulins seems to produce less day-to-day variability and better predictability. Some youngsters need lente or NPH added at breakfast or at the midday meal. Some need a late morning and a late afternoon snack, while others do not. All such decisions are based on blood glucose testing results taken in what we call a "24-hour NEDEC profile" (before and 2 hours after breakfast, before and 2 hours after lunch, and before and 2 hours after dinner, plus two or three additional tests in the late evening and early morning hours). With such profile information, food and insulin both can be adjusted accordingly.

In the United States and other countries with similar eating times, this "European" eating pattern often does not exist. An early breakfast with a relatively smaller midday meal, a larger afternoon snack, and much larger evening meal between 5:00 and 6:30 p.m. is common. Bedtime and its snack for the youngest children are around 7:00–8:30 p.m., while older youngsters, adolescents, and young adults do not usually have their last snack and go to bed until about 10:00–11:30 p.m.

With such food distribution and timing, some patients do well with a mixture of regular (or lispro) insulin and NPH before breakfast, regular or lispro (sometimes with NPH) before dinner, and NPH alone at bedtime. This is our traditional three-injection treatment program. Other patients also require regular or lispro insulin before lunch. Some youngsters will not want to take, or will not need, insulin at lunch but do better with, or need, lispro insulin before their relatively larger afternoon snack; if sufficient afternoon activity occurs each day, this may not be needed.

Blood glucose profile data is used to decide how many injections a patient needs each day and when the injections should occur. Emphasis on problem-solving with children and their parents encourages the use of blood glucose results for analysis (not for punishment or "grading" results), and allows patients and their families to make the ultimate decision about how many injections they will take and what goals they want to reach. This inevitably produces better results than having health care professionals make such decisions.

Strategy 2: Lispro Insulin

In the past few years, the introduction of insulin analogs has enhanced this revolutionary DCCT concept of adapting insulin to patients and their individual circumstances. Lispro is the first of many insulin analogs that will be available in the coming years, and it has been used in preschool children,24 school-age children,25 adolescents,26 and young adults27 and also in insulin pumps quite successfully. Not only may lispro reduce episodes of hypoglycemia, but it certainly allows for greater flexibility and greater predictability of absorption.

Although lispro has many advantages, one of its disadvantages is its relatively short duration. For those eating large lunches and/or afternoon snacks, when there may be insufficient activity to compensate for such food amounts, up to five daily injections may be needed (lispro before breakfast with NPH, lispro before lunch also with a small dose of NPH, lispro before the afternoon snack, lispro before dinner with NPH, and NPH at bedtime to provide overnight insulinization.) At NEDEC, lispro has become our routine insulin of choice for all ages of children with type 1 diabetes, both from diagnosis and for previously diagnosed youngsters.

Strategy 3: Flexible Meal Planning and Activity

The dietitian’s role in the DCCT helped promote flexibility and focused on helping those with eating disorders or weight control problems. The concept of providing an individualized meal plan after a thorough nutrition assessment, rather than a "diet," is also important, because "meal planning" is a positive concept, while "diet" suggests food restrictions. The ideas embodied in the exchange system, and more recently in the systems of carbohydrate counting, glycemic indexing of food, and insulin ratios for different types of foods and snacks, can be incorporated for children and adolescents of all ages. Allowing greater flexibility by delivering insulin according to a patient’s style of eating promotes greater freedom, less restrictive notions about food, and perhaps also greater adherence once the blood glucose data for certain foods can be defined.

Consistency of food intake from day to day remains invaluable because it decreases variability and reduces the decisions required regarding how insulin is working or what happens with changes in activity. General pediatric principles of providing adequate calories for growth and preventing mineral and vitamin deficiencies are axiomatic. This becomes more important as total protein quantity is reduced to help avoid renal damage. If milk is somewhat more restricted because of recommended protein restrictions, attention should be paid to adequate calcium intake to ensure appropriate bone mineralization in growing children and teenagers.

General nutrition recommendations to avoid large amounts of saturated animal fat (and to determine low-density lipoprotein [LDL] and total cholesterol levels as a basis for specific recommendations) apply to the pediatric and adolescent populations with type 1 diabetes. A higher prevalence of hyperlipidemia exists in these children compared with children without diabetes.28

Identifying children and families at high risk for hyperlipidemia can also serve to focus on the need for changes in activity level or food intake for the rest of the family. Where there is a family history of hyperlipidemia, premature atherosclerosis, hypertension, or stroke or there is already documented chronic hyperlipidemia, early consideration for lipid-lowering medication may also be recommended, particularly in adolescents. Resins that block cholesterol reabsorption or the newer HMG-CoA reductase inhibitors that block liver cholesterol overproduction may be prescribed.

Stressing the fun aspects of exercise and promoting exercise for the entire family can help decrease the chances of obesity while leaving open the possibility that similar activities might be continued in adulthood. Attention to mid-exercise or post-exercise hypoglycemia requires efforts to proactively adjust insulin and/or food so that hypoglycemia is minimized. Blood glucose monitoring allows individual adjustment and decisions regarding rapid-acting carbohydrates (such as sports drinks or juice) versus more slowly absorbed complex carbohydrates often combined with some protein or fat (such as pizza, ice cream, or chocolate candy).

Table 2. Childhood and Adolescent Diabetes Mellitus: NEDEC Educational Checklist

At diagnosis  Survival education:
• How to administer insulin, how and what to monitor, who and when to call, beginning meal planning
Within 1–2 months after diagnosis In-depth assessment and review:
• Insulin kinetics and administration, monitoring and use of SMBG data, meal planning, activity changes, sick-day guidelines and DKA prevention/treatment, hypoglycemia identification, recogni- tion, prevention, and treatment

• Short-term and long-term treatment goals

• Identification of barriers to improvement including school, learning, and psychosocial and family issues

• Establishment of follow-up guidelines and goals and responsibilities

Yearly In-depth assessment and re-education:
• All of the above plus additional needs including age-appropriate peer pressure, alcohol, sexual education, smoking prevention, eating disorders including bulimia, anorexia, and obesity, diabetes-associated complications assessment, and ongoing barriers to control.
Adapted from Brink SJ, New England Diabetes and Endocrinology Center (NEDEC).

Strategy 4: Home Monitoring and Feedback

The DCCT reinforced the importance of blood glucose monitoring. The more data known and analyzed by patients or their families, the better the outcome might be. Just doing blood glucose levels is not sufficient to produce an improvement in overall glucose control, just as using multiple insulin injections does not automatically produce improved glycemia.

Educational efforts to teach the causes of hyperglycemia and hypoglycemia, how insulin functions, and how food, activity, stress, and illness interact are key components of any diabetes treatment program. For people who cannot read, alternative educational approaches can help in this effort. At NEDEC, we have suggested that ideal blood glucose monitoring takes place before food and whenever insulin is to be given. At a minimum, teaching our patients to react to such blood glucose results allows them to minimize the duration of hyperglycemia if high values occur and to identify hypoglycemia early so that mild, unrecognized episodes can be corrected and severe episodes avoided.

Frequent blood glucose testing also allows analysis to identify recurring patterns of either high or low values, so that adjustments in food, insulin, activity, or some combination might take place. This is a difficult and abstract concept to master and requires efforts to deal with the inconsistencies inherent in any individual’s ability to absorb insulin, eat, and be active. Children of all ages are notorious for their inconsistencies, yet patterns often can be recognized and adjustments made accordingly.

At NEDEC, our preference for many years has been for our patients to use blood glucose meters manufactured with time and date memory capacity so that they can be downloaded to our office computers at each monthly office visit. Ambulatory care can then be reviewed even for patients (often teenagers) who test their blood glucose frequently but find it difficult if not impossible to keep written records of their results.

The concept of self-analysis and pattern recognition is easy for diabetes educators to promote but difficult for many patients to grasp. Using a computer programs (i.e., LifeScan’s InTouch®, Medisense’s Precision QID®, or similar products by Bayer and Boehringer-Mannheim) sometimes can aid in identification of patterns. The wonders of the computer also can be used to help show such patterns in color on the computer screen and provide printouts to be analyzed at home. For some patients, having the averages displayed numerically or showing the wide range of their own data can be helpful when learning how to adjust food, to determine when insulin should be adjusted, or to identify the effects of bursts of activity. With the increasing availability of home computers, some patients and their families have begun downloading their own glucose data for their own weekly analyses at home in a similar manner to what we do in the office at follow-up visits at NEDEC.

Strategy 5: Continuing Team Diabetes Education

The DCCT taught us that the better the glucose control and the better the glycohemoglobin, the fewer the long-term complications. Therefore, everything about our education and follow-up strategies should be based on what was accomplished in the DCCT protocols and how it was accomplished.29 This suggests that a greater focus on age-appropriate education and motivation of patients (and their families) should occur (Table 2).

We should pay particular attention to increasing self-esteem, improving self-care, and sustaining real adult/

parental supervision, even as we allow our children to mature and slowly assume more of their own diabetes care decisions. If this is not being accomplished, of course, parents should be prepared and helped to resume supervision if dangerous hypoglycemia occurs or if glucose and glycohemoglobin goals are not being met.

Health care professionals involved with pediatric and adolescent diabetes care must be skilled not only in providing intensified diabetes care, but also in pediatric, adolescent, parenting, and family issues. The team ideally should be headed by a pediatric or adolescent diabetologist who provides ongoing continuity and develops a philosophy of care for individual patients. The team30 should include a skilled nurse clinician or nurse educator31,32 with behavioral expertise as well as diabetes management skills for these age-groups. Dietitians33-36 with similar interests and knowledge should be an integral part of the team. It is unlikely that DCCT-like success can take place without these components working closely together. Involvement of the family—especially both parents, grandparents, and siblings—helps ensure that diabetes care is not regarded as a dilemma just for the mother of the child or teen with diabetes.37 Documenting educational efforts and creating a system for periodic review of all elements of diabetes care is also helpful for the multidisciplinary team (Tables 3 and 4).

The availability of social workers, psychologists, psychiatrists, and exercise specialists was a helpful adjunct to diabetes teams involved with the DCCT. Focusing on how people learn, how they are motivated, what educational and psychological barriers already exist in their family and home environments, and how these may be overcome should help us to better help our patients help themselves. Successful diabetes care shifts the focus away from health care processionals and toward the youngsters and their family members who must apply diabetes care in their daily lives.

If our patients do not know of the results of the DCCT,38,39 our first goal should be to make sure that this is corrected. Patients might not be as overwhelmingly positive as we may expect because they do not know what blood glucose testing is all about or cannot access the materials for blood glucose testing, due to educational or financial constraints. They may not want to change40 the degree of effort that they are currently expending, or they may need assistance in getting other family members to help. In some cases, they may not know what information they are lacking, and our efforts should be directed at correcting educational deficiencies regarding diabetes and glucose control. Some people may feel nihilistic about their abilities to change, and some merely may not know how important improvement can be for themselves and for their family members.

The road toward applying the DCCT may be difficult. But as we learn more about what affects adherence and compliance and what motivates people to take charge of their own or their family members’ health care needs, we are likely to enjoy more success, although never with as many people as we would like or hope to reach.41

Table 3. NEDEC Long-Term Treatment Goals for Children and Adolescents With Type 1 Diabetes

 

1. Normal growth without obesity

2. Normal sexual maturation and age-appropriate function

3. Normal psychosocial development

4. No hyperglycemia symptoms

5. Ideally no hypoglycemic symptoms but at least no severe or recurring hypoglycemia requiring assistance of others for treatment and no unconscious episodes or convulsions

6. No ketoacidosis requiring emergency room treatment or hospitalization

7. No interference with schooling

8. No interference with age-appropriate activities; normal quality of life

9. Age-appropriate knowledge about diabetes treatment

10. Age-appropriate acceptance of living with diabetes as a chronic illness

11. Ability to ask for assistance as age-appropriate and to wear/carry emergency identification

12. Age-appropriate responsibility for self-care

13. Family-appropriate sharing of care

14. Appropriate follow-up and monitoring of diabetes regimen

a. Height and weight plotted
b. Sexual maturation
c. A1c/GHb

15. Appropriate follow-up and monitoring of diabetes-associated complications

a. Lipids
b. Microalbuminuria/proteinuria
c. BP
d. Ophthalmologic status
e. Neurological status
f. LJM
g. Thyroid functioning
h. Awareness of and early identification and treatment of diabetes-associated illnesses such as Addison’s disease, celiac disease

16. Appropriate transfer of care after adolescence/young adulthood

17. Near-normalization of blood glucose as produced in DCCT or other pediatric studies or documented improvement with sequential follow-ups

18. Near-normalization of A1c or GHb or documented improvement with sequential follow- ups

19. Ideally prevention of significant retinopathy; if not, then no blindness or diabetes-related cataracts

20. No or minimal hypertension or hypertension treated and normalized with appropriate medication

21. No diabetic nephropathy

22. No diabetic neuropathy

23. No limited joint mobility

24. No premature cardiovascular events: heart attacks, strokes, amputations

Applying the DCCT to Preschool-Aged Children With Type 1 Diabetes42

Special problems must be addressed when attempting to apply the DCCT results to our youngest patients. Adult caretakers of very young children with type 1 diabetes cannot always recognize the earliest warning signs or symptoms of hypoglycemia. The intellectual ability to detect and tell someone about such signs and symptoms is also not yet present developmentally in the youngest children, so hypoglycemic events continue to be a major difficulty as more normal glucose values are sought. Safety issues concerning the myelinization of the nervous system and reports of associations between recurring episodes of severe hypoglycemia and later intellectual functioning43-45 have led, appropriately, to the establishment of higher target glucose goals in the very young.

Earlier reports from Pittsburgh46 suggested that poor blood glucose control in the prepubertal years does not contribute significantly to the long-term complications of type 1. But more recent studies from St. Louis47 and Sydney22 suggest that that total duration of type 1 diabetes "counts" towards development and severity of complications. At NEDEC, we have established the DCCT general glucose and glycohemoglobin target goals (as close to normal as possible without excessive or severe hypoglycemia), but we modify them quite readily when hypoglycemia interferes.

Knowing who provides care at home, including care shared by grandparents or daycare providers, and understanding the knowledge and commitment level of all involved parties is also important if glucose control remains elusive in preschool-aged children.

Table 4. NEDEC Follow-Up Checklist for Children and Teenagers With Type 1 Diabetes

At diagnosis Within 1–2 6 months 6 months after diagnosis 1 year after diagnosis 18–24 months after diagnosis Annually if normal; every 6 months if abnormal

History and Physical Exam

Family history

X

X

X X X

cardiovascular risks

X X X X

smokers

X

X

X X X

diabetes

X X X X

other endocrinopathies

X X X X X

seizures

X X X X X
Systems review X X X X X X
Psychosocial and school evaluation X X X X X X
Physical exam X X X X X

plotted ht & wt

X X

every 3 months

BP

X X X X X X

thyroid evaluation

X X X X X

LJM evaluation

X X X X X

injection sites

X X every visit, at least every 3 months

dilated fundoscopy

X

X

X X X
Ophthalmalogist X X X

Laboratory

A1c or GHb X X at least every 3 months indefinitely and with the same laboratory
Fasting lipids X X X X X X
Urine protein X X X X X X
If > Tanner II or if abnormal proteinuria or BP, urine microalbumin X X X X X X
BUN, creatinine X X X X X
T4, sTSH X X X X X
Thyroid antibodies X X X X X
Endomysial or adrenal antibodies           If thyroid antibodies positive or abnormal thyroid function tests or positive family history
ICA or HLA testing            Only if part of scientific research protocol
Adapted from Brink SJ, New England Diabetes and Endocrinology Center (NEDEC).

We routinely start treatment in preschool-aged children with multiple insulin injections using premeal, pre-snack, and bedtime/evening combinations of lispro coupled with some type of basal insulin (usually NPH, but sometimes lente or ultralente). It is not uncommon for us to use two or three overlapping doses of NPH (breakfast, lunch, and bedtime) with lispro given by algorithms as needed 3–5 times each day (breakfast, lunch, afternoon snack, and dinnertime).48 This seems to provide smaller amounts of insulin at any one moment and decreases the likelihood of hypoglycemia, while allowing better postprandial insulin effect.

In the very youngest children, lispro’s very rapid uptake allows it to be given immediately after eating. Certain toddlers eat in a very unpredictable manner, so having a very rapidly absorbed insulin analog allows parents to see what is eaten and then adjust the insulin accordingly. This replaces our previous, less satisfactory approach of guessing how much a child will eat, battling over quantities of food, and worrying about hyperglycemia (if intake was inadequately anticipated) or hypoglycemia (if food was insufficient). Adapting to the whims of toddlers and preschoolers is also facilitated by multidose algorithm insulin because decisions are changeable every 4–6 hours.

Applying the DCCT to School-Aged Children With Type 1 Diabetes49

In prepubertal children aged 5–12 years, the issues of glucose control often involve parents having responsibility in the beginning, and later sharing responsibility for diabetes care tasks with their child. At NEDEC, we encourage youngsters of this age to participate in food, snack, activity, and testing decisions, but always with direct adult supervision and encouragement.

Most learn the rudiments of insulin dosing in anticipation (our proactive option of adding a few units more of lispro for extra food) of such day-to-day changes better than their elders. However, teaching such proactive choice is abstract and difficult. Many children of this age are not capable of sustaining such responsibility independently and need their parents’ continued involvement and support so that their responsibilities do not become overwhelming.50

Overall staff guidance is needed to keep mothers, and especially fathers, involved. Peer pressure must be addressed with honesty, compassion, and a humorous but positive sense of being able to overcome such potential difficulties. School officials must be engaged in this process, just as after-school coaches and other important adults must be involved in making both the adult and the child comfortable and responsible.

At NEDEC, we continue to stress the importance of frequent blood glucose monitoring and avoid judgmental terms like "good or bad sugars" in favor of "higher or lower values." Our team believes the power of specific words helps set the tone for our philosophy of focusing the blood glucose testing process on problem solving. Helping to avoid family battles or accusations of "cheating" by focusing blood glucose testing on problem solving keeps the focus on our long-term goals of improved glucose control through cooperation and flexibility.

In the school-aged and older child, lispro insulin promotes more normalization of medication–food relationships since it eliminates the necessity of waiting 30–45 minutes after taking insulin to eat. (Most youngsters, as well as most adults, never really waited, anyway.) With the rapid absorption of lispro, a not-so-subtle problem is removed by providing a way of giving insulin that is technically more correct and no longer sets up a dichotomy between what the health care team suggests and the day-to-day realities of home and school life.

Applying the DCCT to Adolescents, Late Adolescents, and Young Adults With Type 1 Diabetes51,52

The developmental tasks of adolescents produce direct conflict with the demands of living with diabetes. Adolescents’ "job" involves taking some risks regarding how and when they can function in the world, pushing their own limits and boundaries until they decide how their new sense of independence should function. In diabetes terms, this normal rebelliousness can be focused on a large number of additional rules and regulations. Parental involvement remains critical so that teens with type 1 diabetes can learn how much and how far they can go without getting into trouble. Frequent office follow-up gives diabetes team members the opportunity to know their patients and, therefore, to place any nonadherent behavior in its proper perspective.

Issues include decisions about sleeping late, how much teens should eat at school or away from home, whether or not others should know about their diabetes or watch them take blood tests or insulin injections, and decisions concerning hypoglycemia and sports, medic-alert identification, driving, smoking, and alcohol and marijuana use. These decisions have enormous impact for adolescents who are normally self-conscious about how peers might respond.

The DCCT showed that many teenagers can succeed with appropriate knowledge, support, and empowerment. In both young men and young women, issues of body consciousness, weight control, and eating disorders may interfere with diabetes control when the young person with diabetes learns that omitted insulin produces glycosuria, calorie loss, and thus weight loss at the same time overeating occurs. (At NEDEC we call this "diabulimia.") General issues of depression in both teenage boys and teenage girls can interfere with glucose control, just as other chronic illnesses (asthma, epilepsy, thyroid or adrenal problems, celiac disease) or learning problems can hamper applying known diabetes control principles and sustaining such efforts.

Continued supervision and support during early adolescence allows appropriate shifting of diabetes care to teenagers without undo risk of failure. Teenagers are capable of assuming such responsibilities at different chronological ages, but can become nihilistic when faced with overwhelming responsibilities and early failures of support or achieving goals. Maintaining an open relationship that allows for frequent staff contact, honest exchange of frustrations, and a constant re-education program is helpful.

Many teens who have lived with diabetes for a long time have not incorporated their knowledge adequately and so require new (re-)education efforts that focus on their own questions, needs, and idiosyncrasies. Group support in weekend, summer, or winter programs with other teen-agers and young adults living with type 1 diabetes is helpful,53 as is the frequent contact so critical for success in the DCCT. Availability of staff, especially nursing staff and dietitians, allows the telephone, fax machine, and e-mail system to promote problem-solving behavior and ongoing support between visits. The diabetes health care team must constantly take care to provide information about long-term complications associated with diabetes without excessive focus on information that may lead to feelings of hopelessness.

If empowerment toward improved self-control can take place, then patients benefit enormously.54,55 A key message to impart (from the secondary prevention cohort of the DCCT) is that any improvement lowers the risks for diabetes-related complications. In those with the worst glycemic control or those with early diabetes complications, improvement should be slow and steady, with close ophthalmologic observation to make sure that retinopathy does not significantly worsen as glucose levels are lowered.

Conclusions

Applying the message of the DCCT, increasing blood glucose monitoring and feedback, establishing and revising glucose target goals, and doing so safely should now be the modus operandi for type 1 diabetes care. This should apply to infants, toddlers, older children, and teenagers while always striving to minimize or prevent severe episodes of hypoglycemia—and recognizing that it remains impossible to always have perfect blood glucose control. While this goal is not achievable for all, any improvement in glycemia translates into reduced risks for long-term complications.

Many health care professionals56 do not recognize or promote improved glucose control, so our efforts should go toward helping to make this a priority, just as evaluating and treating hypertension and cholesterol abnormalities have become more mainstream interventions in recent years. Creatively accepting the challenge of applying the DCCT to the children and adolescents for whom we provide care should dramatically improve their long-term quality of life.


References

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2The DCCT Research Group: Lifetime benefits and costs of intensive therapy as practiced in the Diabetes Control and Complications Trial. J Am Med Assoc 276:1409-15, 1996.

3The DCCT Research Group: The absence of a glycemic threshold for the development of long-term complications: the perspective of the Diabetes Control and Complications Trial. Diabetes 45:1289-98, 1995.

4Danne T, Weber B, Hartmann R, Enders I, Burger W, Hovener G: Long-term glycemic control has a nonlinear association to the frequency of background retinopathy in adolescents with type 1 diabetes: follow-up of the Berlin Retinopathy Study. Diabetes Care 17:1390-96, 1994.

5The DCCT Research Group: The relationship of glycemic exposure (HbA1c) to the risk of development and progression of retinopathy in the Diabetes Control and Complications Trial. Diabetes 44:968-83, 1995.

6The DCCT Research Group: Effect of intensive diabetes treatment on the development and progression of long-term complications in adolescents with insulin-dependent diabetes mellitus: Diabetes Control and Complications Trial. J Pediatr 125:177-88, 1994.

7Baum JD, Kinmoth AL: Care of the Child with Diabetes. Edinburgh, Churchill Livingstone, 1985.

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Note of disclosure: Dr. Brink receives research support from Eli Lilly and NovoNordisk and receives speakers’ honoraria from Eli Lilly, NovoNordisk, Bayer, Boehringer-Mannheim, LifeScan, Medisense, and Minimed. He serves on the Endocrine Panel of the United States Pharmacopeia (USP) and on advisory panels for Medisense and Becton Dickinson. Dr. Brink has been an officer of the American Diabetes Association and the International Society for Pediatric and Adolescent Diabetes (ISPAD). Dr. Moltz receives speakers’ honoraria from Eli Lilly, NovoNordisk, and Minimed.


Stuart J. Brink, MD, is a senior endocrinologist at the New England Diabetes and Endocrinology Center in Waltham, Mass., director of Pediatric and Adolescent Diabetes and Endocrinology at Newton Wellesley Hospital in Newton, Mass., and an associate clinical professor of pediatrics at Tufts University School of medicine in Boston. Kathleen Moltz, MD, is an endocrinologist at the New England Diabetes and Endocrinology Center and a clinical instructor in pediatrics at Tufts University School of Medicine.


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