The impact of telemedicine on pediatric type 1 diabetes management: benefits, challenges, and future directions

Telehealth includes health care services provided using audio and video technology. Telehealth was originally developed to provide basic care to rural and underserved patients. Higher rates of use of telehealth are now standard in many practices since the coronavirus disease 2019 pandemic. Increasing emphases on patient satisfaction, providing efficient and quality care, and minimizing costs have also led to higher telehealth implementation. Patients and providers have enjoyed the benefits of telehealth, but widespread adoption has been hindered by regulatory, legal, and reimbursement barriers. Recent legislative initiatives have advocated for further telehealth advancements, especially with the rapid implementation of telehealth in the times of coronavirus disease 2019. Show more

This article describes the methods, results and limitations of the International Diabetes Federation (IDF) Diabetes Atlas 9th edition estimates of worldwide numbers of cases of type 1 diabetes in children and adolescents.

Type 1 diabetes is characterized by an immune-mediated depletion of β-cells that results in lifelong dependence on exogenous insulin. While both type 1 and type 2 diabetes result in hyperglycemia, the pathophysiology and etiology of the diseases are distinct and require us to consider each type of diabetes independently. As such, this position statement summarizes available data specific to the comprehensive care of individuals with type 1 diabetes. The goal is to enhance our ability to recognize and manage type 1 diabetes, to prevent its associated complications, and to eventually cure and prevent this disease. Incidence and Prevalence of Type 1 Diabetes The exact number of individuals with type 1 diabetes around the world is not known, but in the U.S., there are estimated to be up to 3 million (1). Although it has long been called “juvenile diabetes” due to the more frequent and relatively straightforward diagnosis in children, the majority of individuals with type 1 diabetes are adults. Most children are referred and treated in tertiary centers, where clinical data are more readily captured. The SEARCH for Diabetes in Youth study estimated that, in 2009, 18,436 U.S. youth were newly diagnosed with type 1 diabetes (12,945 non-Hispanic white, 3,098 Hispanic, 2,070 non-Hispanic black, 276 Asian-Pacific Islander, and 47 American Indian) (2). Worldwide, ∼78,000 youth are diagnosed with type 1 diabetes annually. Incidence varies tremendously among countries: East Asians and American Indians have the lowest incidence rates (0.1–8 per 100,000/year) as compared with the Finnish who have the highest rates (>64.2 per 100,000/year) (3). In the U.S., the number of youth with type 1 diabetes was estimated to be 166,984 (4). The precise incidence of new-onset type 1 diabetes in those over 20 years of age is unknown. This may be due to the prolonged phase of onset and the subtleties in distinguishing the different types of diabetes. In one European study of adults aged 30–70 years, ∼9% tested positive for GAD antibodies (GADA) within 5 years of a diabetes diagnosis, consistent with other studies (5). Adults with type 1 diabetes often receive care in primary care settings rather than with an endocrinologist. Unlike the consolidated care seen in pediatric diabetes management, the lack of consolidated care in adults makes incidence and prevalence rates difficult to characterize, and therefore they are often underestimated. The number of adults living with type 1 diabetes is increasing due to two factors: 1) the rising number of new-onset cases of type 1 diabetes in adults, including those diagnosed with latent autoimmune diabetes in adults (LADA), and 2) individuals with childhood-onset diabetes are living longer (6,7). Classification and Diagnosis Type 1 diabetes has traditionally been diagnosed based on clinical catabolic symptoms suggestive of insulin deficiency: polyuria, polydipsia, weight loss, and marked hyperglycemia that is nonresponsive to oral agents. It is classified as an autoimmune disease with progressive β-cell destruction, resulting in a physiological dependence on exogenous insulin. Recent studies have broadened our understanding of the disease, but have made diagnosis more complex. There is tremendous variability in the initial presentation of type 1 diabetes in both youth and adults. Children often present acutely, with severe symptoms of polyuria, polydipsia, and ketonemia. However, in adults, type 1 diabetes presents with a more gradual onset, with a clinical presentation that may initially appear consistent with type 2 diabetes. Distinguishing between type 1 and type 2 diabetes presents diagnostic challenges. Traditionally, progressive β-cell destruction has been the hallmark of type 1 diabetes, but residual C-peptide (a surrogate marker for insulin secretion) may be detected over 40 years after initial diagnosis, regardless of whether the initial diagnosis was made in childhood or in adulthood (8). Clinical Clues Much of the diagnosis will depend on clinical clues, but the rising incidence of overweight/obesity has also confounded the diagnosis of type 1 diabetes. A lean individual presenting with clinical symptoms without a first-degree relative with diabetes (but often with a history of distant relatives with type 1 diabetes or other autoimmune disease) is generally suggestive of type 1 diabetes. An overweight individual (of any age) with metabolic syndrome and a strong family history of type 2 diabetes may be assessed only for the development of type 2 diabetes, even though type 1 diabetes is on the differential diagnosis. Obesity does not preclude that autoimmunity and hyperglycemia will occur even amid the relatively higher levels of endogenous insulin secretion observed in obesity. In young patients aged 10–17 years with phenotypic type 2 diabetes, 10% have evidence of islet autoimmunity suggesting that type 1 diabetes was the likely diagnosis (9). Thus, although leaner individuals are more likely to be diagnosed as having type 1 diabetes, the potential for type 1 diabetes exists in those who phenotypically appear to have type 2 diabetes. If hyperglycemia persists after treatment with noninsulin agents, which is unusual in the treatment of newly diagnosed type 2 diabetes, then type 1 diabetes should be considered. Pancreatic Autoantibodies Pancreatic autoantibodies are characteristic of type 1 diabetes. Highly sensitive laboratory measurements capture ∼98% of individuals with autoantibodies at diagnosis (10). Unfortunately, most commercial laboratories do not have reliably sensitive or specific assays that measure all five autoantibodies: GADA, islet cell antibodies (ICA), insulin autoantibodies (IAA), protein tyrosine phosphatase antibodies (ICA512 or IA2A), and zinc transporter protein (ZnT8). Thus, it may be inappropriate to report a patient as autoantibody negative. Another cause of “false-negative” autoantibodies is testing far out from diagnosis as antibody titers diminish over time (Fig. 1). It appears that there is an increased incidence of type 1 diabetes in ethnic populations where autoantibody markers may be of variable utility, such as in Asians where autoantibodies are often negative (11–15). Figure 1 The percentage of antibody-positive subjects is affected by the duration of type 1 diabetes for GADA (A) and IA2A (B). Given an increase in the scatter (due to lower numbers of subjects), the x-axis is truncated at a duration of 30 years. Reproduced with permission from Tridgell et al. (16). Family History Type 1 diabetes has a genetic predilection and, in some cases, can be predicted in family members. The overall prevalence of type 1 diabetes in the U.S. is ∼0.3%, but if a first-degree relative has diabetes, the empiric risk of being affected is ∼5% (17,18), representing a 15-fold increase among family members. Studies evaluating children at risk for developing type 1 diabetes have shown that the presence of more than two autoantibodies was associated with a nearly 70% risk for disease development within 10 years and 84% within 15 years (19). Evaluating at-risk individuals in the clinical setting is not yet recommended due to limited clinical interventions; however, ongoing research studies are identifying at-risk individuals through genetic testing in both the lower-risk general population and in the higher-risk population of relatives of people with type 1 diabetes. Recommendations Diagnosis The American Diabetes Association’s (ADA’s) diagnostic criteria for type 1 and type 2 diabetes are the same (Table 1). (A) Consider measurement of pancreatic autoantibodies to confirm the diagnosis of type 1 diabetes. (B) Table 1 Criteria for the diagnosis of diabetes A1C ≥6.5%. The test should be performed in a laboratory using a method that is NGSP certified and standardized to the DCCT assay.* OR FPG ≥126 mg/dL (7.0 mmol/L). Fasting is defined as no caloric intake for at least 8 h.* OR Two-hour plasma glucose ≥200 mg/dL (11.1 mmol/L) during an oral glucose tolerance test. The test should be performed as described by the World Health Organization, using a glucose load containing the equivalent of 75 g anhydrous glucose dissolved in water.* OR In a patient with classic symptoms of hyperglycemia or hyperglycemic crisis, a random plasma glucose ≥200 mg/dL (11.1 mmol/L). * In the absence of unequivocal hyperglycemia, result should be confirmed by repeat testing. Identification of At-Risk Relatives Inform type 1 diabetic patients of the opportunity to have their relatives tested for type 1 diabetes risk in the setting of a clinical research study. (B) Initial Evaluation and Follow-up General Considerations All patients with type 1 diabetes need age-appropriate care, with an understanding of their specific needs and limitations. Infants and toddlers are approached quite differently from adolescents; the needs of young adults may vary from middle-aged or older adults. Regardless of age, the patient’s needs are the same: an individualized care plan with ongoing education and support, ongoing assessment for acute and chronic complications, and access to medical providers with type 1 diabetes expertise. Just as patients change, the therapeutic approach should change and should be evaluated at each visit and modified as needed. Type 1 diabetes care must be an iterative process, adapted as the needs of the individual evolve. Clinical assessments for type 1 diabetes in children and adults should incorporate age-appropriate and complication-focused evaluations, based on the likelihood that an abnormality will be present. For example, a young adult with low cardiovascular disease (CVD) risk and no complications may need more of an assessment of lifestyle adjustment as opposed to an older adult with longer duration of the disease who may need more evaluation of vascular and neurological issues. Transition of Care From Pediatric to Adult Providers As youth transition into emerging adulthood, the supportive infrastructure often abruptly disappears and glycemic control tends to deteriorate. The ADA recognizes that this is a challenging time and recommends a strong, practical transition plan to anticipate the upcoming changes. A successful transition plan should be initiated early (e.g., early teenage years) and include ongoing dialogue between the family and youth. The discussion should include finances, insurance, obtainment of supplies, identification of an adult care provider (ideally with communication between the two providers), psychosocial issues (e.g., depression), and other issues identified by the family/youth. Health care providers, family, and youth should agree to an achievable diabetes management plan and provide resources for unanticipated issues. We refer the reader to the ADA’s position statement on diabetes care for emerging adults (20). Table 2 provides the childhood developmental phases and needs. Tables 3, 4, and 5 provide detailed elements of the initial and follow-up evaluation in individuals with type 1 diabetes. Table 2 Major developmental issues and their effect on diabetes in children and adolescents Developmental stages (ages) Normal developmental tasks Type 1 diabetes management priorities Family issues in type 1 diabetes management Infancy (0–12 months) Developing a trusting relationship or bond with primary caregiver(s) Preventing and treating hypoglycemia Coping with stress     Avoiding extreme fluctuations in blood glucose levels Sharing the burden of care to avoid parent burnout Toddler (13–26 months) Developing a sense of mastery and autonomy Preventing hypoglycemia Establishing a schedule     Avoiding extreme fluctuations in blood glucose levels due to irregular food intake Managing the picky eater       Limit-setting and coping with toddler’s lack of cooperation with regimen       Sharing the burden of care Preschooler and early elementary school (3–7 years) Developing initiative in activities and confidence in self Preventing hypoglycemia Reassuring child that diabetes is no one’s fault     Coping with unpredictable appetite and activity Educating other caregivers about diabetes management     Positively reinforcing cooperation with regimen     Trusting other caregivers with diabetes management Older elementary school (8–11 years) Developing skills in athletic, cognitive, artistic, and social areas Making diabetes regimen flexible to allow for participation in school or peer activities Maintaining parental involvement in insulin and blood glucose management tasks while allowing for independent self-care for special occasions   Consolidating self-esteem with respect to the peer group Child learning short- and long-term benefits of optimal control Continuing to educate school and other caregivers Early adolescence (12–15 years) Managing body changes Increasing insulin requirements during puberty Renegotiating parent and teenager’s roles in diabetes management to be acceptable to both   Developing a strong sense of self-identity Diabetes management and blood glucose control becoming more difficult Learning coping skills to enhance ability to self-manage     Weight and body image concerns Preventing and intervening in diabetes-related family conflict       Monitoring for signs of depression, eating disorders, and risky behaviors Later adolescence (16–19 years) Establishing a sense of identity after high school (decisions about location, social issues, work, and education) Starting an ongoing discussion of transition to a new diabetes team (discussion may begin in earlier adolescent years) Supporting the transition to independence     Integrating diabetes into new lifestyle Learning coping skills to enhance ability to self-manage       Preventing and intervening with diabetes-related family conflict       Monitoring for signs of depression, eating disorders, and risky behaviors Table 3 Medical history Age and characteristics of onset of diabetes (e.g., DKA, asymptomatic laboratory finding) Eating patterns, physical activity habits, nutritional status, and weight history Whether or not patient wears medical alert identification Diabetes education history; health literacy assessment Review of previous insulin treatment regimens and response to therapy (A1C records), treatment preferences, and prior difficulty with therapies Current treatment of diabetes, including medications and medication adherence, meal plan, physical activity patterns, and readiness for behavior change Use of insulin, insulin pumps, carbohydrate ratios, and corrections; knowledge of sick-day rules; ketone testing; pump troubleshooting (if applicable) Results of glucose monitoring, including SMBG and CGM and patient’s use of data DKA frequency, severity, and cause Hypoglycemic episodes  Hypoglycemia unawareness  Any severe hypoglycemia: frequency and cause  Whether or not patient has glucagon available and someone to administer it History of diabetes-related complications  Microvascular: retinopathy, nephropathy, and neuropathy (sensory, including history of foot lesions; autonomic, including sexual dysfunction and gastroparesis)  Macrovascular: coronary heart disease, cerebrovascular disease, and peripheral artery disease  Other: dental disease Psychosocial issues, including current or past history of depression, anxiety, eating disorders, and others; assess support systems and need for assistance History of pregnancy and any diabetes-related complications; desire for future pregnancies Contraception (if a woman is of childbearing age) Smoking Alcohol use, abuse, and impact on blood glucose levels Illicit drug use Driving Table 4 Children and adolescents* Clinical evaluation Initial Annual Quarterly follow-up Height X X X Weight X X† X† BMI percentile X X X Blood pressure X X X General physical exam X X Thyroid exam X X X Injection/infusion sites X (if already on insulin) X X Comprehensive foot exam‡ If needed, based on age Beginning with older teens with diabetes since childhood Visual foot exam X If needed, based on high-risk characteristics Retinal exam by eye care specialist X§ In some cases, may be done every 2 years (see ADA Standards of Care) Depression screen X X X Hypoglycemia assessment X X X Diabetes self-management skills X X X Physical activity assessment X X X Assess clinically relevant issues (e.g., alcohol, drug, and tobacco use; use of contraception; driving) X As needed for teens As needed for teens Nutritional knowledge X X As needed Query for evidence of other autoimmune disease X As needed As needed Immunizations as recommended by CDC X X As needed Laboratory assessments Initial Annual Follow-up A1C X X Every 3 months Creatinine clearance/estimated glomerular filtration rate X X Lipid panel|| Once glycemia is stable X As needed based on treatment TSH X X As needed based on treatment Frequency of testing varies based on clinical symptoms, presence of antibodies, and/or if on treatment Antithyroid antibodies (antithyroid peroxidase and antithyroglobulin antibodies) X Repeat as clinically indicated Frequency of testing is unknown; test if symptoms are present or for periodic screening Celiac antibody panel X Repeat as clinically indicated Frequency of testing is unknown; test if symptoms are present or for periodic screening Urine albumin-to-creatinine ratio Starting 5 years after diagnosis X As needed based on treatment Islet cell antibodies: GADA/IA2A/IAA/ZnT8 X May be needed in new-onset patients to establish diagnosis C-peptide levels X Occasionally needed to establish type 1 diabetes in a patient on insulin or to verify type 1 diabetes for insurance purposes—always measure a simultaneous blood glucose level * Assumes a patient has a health care provider to manage the nondiabetes-related health assessments and to perform annual evaluations. † Patient may opt out of measurement if psychologically distressing. ‡ Foot inspection should be done at each visit and self-exams taught if high-risk characteristics are present. Comprehensive foot exam includes inspection, palpation of dorsalis pedis and posterior tibial pulses, presence or absence of patellar and Achilles reflexes, and determination of proprioception, vibration, and monofilament sensation. § Within 5 years after diagnosis. || If triglycerides are elevated in a nonfasting specimen, measure a direct LDL cholesterol level. Table 5 Adults* Clinical evaluation Initial Annual Follow-up Height X Weight X X† X† BMI X X Blood pressure X X X General physical exam X Thyroid exam X If indicated Injection/infusion sites X X X Comprehensive foot exam‡ X X Visual foot exam As needed—at each visit, if high-risk foot Retinal exam by eye care specialist§ Starting 5 years after diagnosis; earlier if visual symptoms and/or true date of diagnosis is unknown In some individuals, screening may be done every 2 years (see ADA Standards of Medical Care) Depression screen X X Hypoglycemia assessment X X X Diabetes self-management skills X X X Physical activity assessment X X X Assess clinically relevant issues (e.g., alcohol, drug, and tobacco use; use of contraception; driving) X As needed As needed Nutritional knowledge X X As needed Query for evidence of other autoimmune disease X As needed based on clinical scenario As needed based on clinical scenario Immunizations as recommended by CDC X X As needed Laboratory assessments Initial Annual Follow-up A1C X X Every 3 months Creatinine clearance/estimated glomerular filtration rate X X Fasting lipid panel|| X X As needed based on treatment TSH X X As needed based on treatment Frequency of testing varies based on clinical symptoms, presence of antibodies, or if on treatment Antithyroid antibodies X Frequency of testing is unknown; test if symptoms are present or for periodic screening Celiac antibody panel X Frequency of testing is unknown; test if symptoms are present or for periodic screening Urine albumin-to-creatinine ratio X X GADA X May be needed in new-onset patients to establish diagnosis C-peptide levels X Occasionally needed to establish type 1 diabetes in a patient on insulin or to verify type 1 diabetes for insurance purposes—always measure a simultaneous blood glucose level * Assumes a patient has a health care provider to manage the nondiabetes-related health assessments and to perform annual evaluations. † Patient may opt out of measurement if psychologically distressing. ‡ Foot inspection should be done at each visit and self-exams taught if high-risk characteristics are present. Comprehensive foot exam includes inspection, palpation of dorsalis pedis and posterior tibial pulses, determination of presence or absence of patellar and Achilles reflexes, and determination of proprioception, vibration, and monofilament sensation. § In some instances, the test may not need to be done yearly. || If a patient is unable to undertake a fasting test due to hypoglycemia, measure a direct LDL cholesterol level. Assessing the history of acute complications (e.g., severe hypoglycemia/hyperglycemia and diabetic ketoacidosis [DKA]) is important. Providers should provide continuing education for the patient/family to prevent ongoing recurrence. For example, it is important to review exercise management to reduce hypoglycemia risk and discuss sick-day management to reduce DKA risk. Risk factor (e.g., cardiovascular) evaluation for prevention and screening for early evidence of micro- and macrovascular complications for early intervention should be implemented starting in adolescence and continue through adulthood. For children, risk factors should be assessed shortly after diagnosis based on family history and initial screening laboratory test results. Providers should manage risk factors, considering age-specific goals and targets (e.g., blood pressure, lipid, depression, and BMI assessment and management). The frequency of ongoing screening for complications should be based on age and disease duration. Coexistent Autoimmunity Celiac Disease Celiac disease is an immune-mediated disorder that occurs with increased frequency in patients with type 1 diabetes (1–16% of individuals compared with 0.3–1% in the general population) (21,22). Symptoms of celiac disease include diarrhea, weight loss or poor weight gain, abdominal pain, bloating, chronic fatigue, malnutrition due to malabsorption, and unexplained hypoglycemia or erratic blood glucose levels. Screening for celiac disease with serum levels of tissue transglutaminase or antiendomysial antibodies should be considered soon after the diagnosis of diabetes and/or if symptoms develop. Individuals who test positive should be referred to a gastroenterologist for possible small-bowel biopsy to confirm the diagnosis, although this is not necessary in all cases. Symptomatic children with strongly positive antibodies and supportive genetic or HLA testing may not require a biopsy, but asymptomatic at-risk children should have a biopsy (23). In symptomatic individuals with type 1 diabetes and confirmed celiac disease, a gluten-free diet reduces symptoms and decreases rates of hypoglycemia (24). Thyroid Disease About one-quarter of children with type 1 diabetes have thyroid autoantibodies (thyroid peroxidase antibodies or antithyroglobulin antibodies) at the time of diagnosis (25,26). The presence of thyroid autoantibodies is predictive of thyroid dysfunction, generally hypothyroidism and less commonly hyperthyroidism (27). Thyroid dysfunction is more common in adults with type 1 diabetes, although the exact prevalence is unknown. Women are more commonly affected than men. Subclinical hypothyroidism, hyperthyroidism, or coexistent Addison disease (adrenal insufficiency) may also deteriorate metabolic control with increased risk of symptomatic hypoglycemia (28) and may reduce linear growth in children (29). Additional Considerations for Pediatrics All children require some level of adult supervision in managing their diabetes. Assessments of pediatric patients should address issues specific to infants/preschoolers, school-aged children, adolescents, and emerging adults (Table 2). Health care providers should do a thorough assessment of the developmental needs of the youth (and caregiver), focusing on physical and emotional development, family issues, and psychosocial needs. The diabetes treatment plan should be individualized and tailored to the needs of individual patients and their families. Efforts to achieve target blood glucose and A1C levels should be balanced with preservation of quality of life and protect against excessive hypoglycemia. Height and weight should be measured at each visit and tracked via appropriate height and weight growth charts. An age-adjusted BMI can be calculated starting at age 2 years. These tools can be found for children and teens at http://apps.nccd.cdc.gov/dnpabmi. Blood pressure measurements should be determined correctly, using the appropriate size cuff and with the child seated and relaxed. Hypertension should be confirmed on at least 3 separate days. Normal blood pressure levels for age, sex, and height and appropriate methods for determinations are available online at www.nhlbi.nih.gov/health/prof/heart/hbp/hbp_ped.pdf. Chronic Complications in Children Retinopathy, nephropathy, and neuropathy rarely have been reported in prepubertal children and children with diabetes duration of only 1–2 years; however, they may occur after the onset of puberty or after 5–10 years of diabetes (30). As screening recommendations are based on recent evidence, these periodically change. Therefore, we refer the reader to the ADA Standards of Care for the current screening recommendations for children. It is recommended that those with expertise in diabetes management should conduct the assessments. For example, ophthalmologic exams should be performed by those skilled in diabetic retinopathy management and experienced in counseling pediatric patients and parents on the importance of early prevention/intervention. Another example, nephrologists with experience with diabetic nephropathy would be aware that intermittent elevations in urinary albumin excretion are common in pediatric patients, particularly in association with exercise. Additional Considerations for Adults Adults with type 1 diabetes now span a very large age spectrum—from 18 to 100 years of age and beyond. Unlike the well-characterized developmental stages of children, the life stages traversed through adulthood are often less well documented and underappreciated. However, an understanding of each individual’s circumstances is vital. This is true for aging in general, but particularly true for those with significant comorbidities due to long-standing type 1 diabetes. Thus, it is important to assess the clinical needs of the patient, setting specific goals and expectations that may differ significantly between a healthy 26-year-old and a frail 84-year-old with CVD and retinopathy. Recommendations See 2014 ADA Standards of Medical Care for detailed screening information for CVD, nephropathy, retinopathy, neuropathy, and foot care. Access to health care should include clinicians with expertise in type 1 diabetes management, including (but not limited to) an endocrinologist (or other health care provider with expertise in type 1 diabetes management), a registered dietitian, a diabetes educator, a mental health professional, an exercise specialist/physiologist, and specialists required to treat diabetes complications. (E) Routine follow-up (generally quarterly) should include review of self-monitoring of blood glucose (SMBG), continuous glucose monitoring (CGM) and pump data (if applicable), A1C measurement, evidence for acute and/or chronic complications of diabetes (particularly episodes of DKA and mild and/or severe hypoglycemia), measurement of blood pressure and weight (and height in children), foot exam, inspection of injection/insertion sites, and discussion of psychosocial and educational needs (Tables 4 and 5). (E) Providers should routinely document the patient’s age and disease duration. When clinically indicated, laboratory measures such as lipids, renal function measurements, and antibodies for associated autoimmune disease (thyroid or celiac disease) should be documented. (E) Parent/guardian involvement in care is required throughout childhood, with a gradual shift in responsibility of care from the parent/guardian to the youth. (E) Health care for adults should be focused on the needs of the individual throughout the various stages of their life, with age-appropriate evaluation and treatment. (E) Evaluation and treatment of CVD risk should be individualized. (E) Immunizations should be given as recommended by the Centers for Disease Control and Prevention (CDC) for children/adults in general and people with diabetes specifically. (C) Consider screening for celiac disease by measuring IgA antitissue transglutaminase or antiendomysial antibodies, with documentation of normal total serum IgA levels, soon after the diagnosis of diabetes and/or if symptoms develop. Refer the patient to a gastroenterologist if the test is positive. (E) Consider screening for thyroid peroxidase and thyroglobulin antibodies soon after diagnosis. (E) Screen for thyroid dysfunction by measuring thyroid-stimulating hormone (TSH) concentrations soon after type 1 diabetes diagnosis (and after stable metabolic control). If normal, consider rechecking every 1–2 years or more frequently if the patient develops unusual glycemic variation or symptoms of thyroid dysfunction or thyromegaly. (E) Assess for the presence of additional autoimmune conditions at diagnosis and if symptoms develop. (E) Ongoing nutrition and diabetes self-management education (DSME) and support (DSMS) are needed to address changes in food preferences, access to food, daily schedules, activity patterns, and potential barriers to self-care, including the risk of an eating disorder. (E) Assess psychosocial status annually and more often as needed; treat and/or refer to a mental health professional as indicated. (E) DSME and DSMS DSME and DSMS are the ongoing processes of facilitating the knowledge, skill, and ability necessary for diabetes self-care. These processes incorporate the needs, goals, and life experiences of the person with diabetes. The overall objectives of DSME and DSMS are to support informed decision making, self-care behaviors, problem solving, and active collaboration with the health care team to improve clinical outcomes, health status, and quality of life in a cost-effective manner (31). Because changes in both treatment and life circumstances occur across the life span, DSME and DSMS must be a continuous process adapted throughout the life of the person with type 1 diabetes so that self-management can be sustained. No matter how sound the medical regimen, it can only be as successful as the ability of the individual and/or family to implement it. Family involvement remains an important component of optimal diabetes management throughout childhood and adolescence. Health care providers who care for children and adolescents must, therefore, be capable of evaluating the educational, behavioral, emotional, and psychosocial factors that impact implementation of a treatment plan and must assist the individual and family to overcome barriers or redefine goals as appropriate (Table 6). Diabetes education should occur at diagnosis and upon transition to adult diabetes care and should be an ongoing process. The information needs to be individualized and continually adapted to the patient’s needs. Table 6 DSME content based on life stages Infancy (birth–18 months)  Period of trust versus mistrust  Providing warmth and comfort measures after invasive procedures is important  Feeding and sleeping or nap routines  Vigilance for hypoglycemia Play age (3–5 years)  Reassurance that body is intact, use of Band-Aids and kisses after procedures  Identification of hypoglycemic signs and symptoms (temper tantrums and nightmares are common)  Include child in choosing injection and finger-prick sites  Positive reinforcement for cooperation  Begin process for teaching child awareness of hypoglycemia School age (6–12 years)  Integrate child into educational experience  Determine skill level  Identify self-care skills  Determine roles and responsibilities  Communication with peers and school staff—who and when to tell about diabetes Adolescence (12–18 years)  Begin transition care planning  Personal meaning of diabetes  Determine roles and responsibilities in care  Social situations and dating  Who or when to tell about diabetes  Driving  Sex and preconception counseling  Alcohol and drugs  College and career planning Young adults  Personal meaning of diabetes  Roles and responsibilities in care  Social situations and dating  Who or when to tell about diabetes  Genetic risks, conception, and preconception  Travel  Choosing or pursuing a career  Workplace rights  Health or life insurance  Involving friends and significant others in diabetes care  Safety  Creating a support network  Establishing or maintaining independence Middle-aged adults  Personal meaning of diabetes  Roles and responsibilities in care  Involving spouse or significant other in care  Sexual functioning  Developing a support network  Travel  Pursuing a career  Workplace rights  Health or life insurance  Talking with children or other family members about diabetes  Balancing other responsibilities with diabetes care  Safety  Facing complications Older adults  Personal meaning of diabetes  Roles and responsibilities in care  Maintaining independence  Obtaining assistance with diabetes care tasks  Involving spouse or significant other in care  Travel  Talking with adult children or other family members about diabetes  Safety  Assessing for declines in ability to perform self-care/activities of daily living  Caring for diabetes along with other chronic illnesses or comorbidities  Obtaining health care when living in multiple locations  Community resources  Care of type 1 diabetes in long-term or other care facilities Recommendations Individuals with type 1 diabetes and parents/caregivers (for individuals aged 16 years of age (60). These devices may offer the opportunity to reduce severe hypoglycemia for those with a history of nocturnal hypoglycemia, although more clinical trials are needed. Recommendations Patients with type 1 diabetes should perform SMBG prior to meals and snacks, at a minimum, and at other times, including postprandially to assess insulin-to-carbohydrate ratios; at bedtime; midsleep; prior to, during, and/or after exercise; when they suspect low blood glucose; after treating low blood glucose until they have restored normoglycemia; when correcting a high blood glucose level; prior to critical tasks such as driving; and at more frequent intervals during illness or stress. (B) Individuals with type 1 diabetes need to have unimpeded access to glucose test strips for blood glucose testing. Regardless of age, individuals may require 10 or more strips daily to monitor for hypoglycemia, assess insulin needs prior to eating, and determine if their blood glucose level is safe enough for overnight sleeping. (B) CGM is a useful tool to reduce A1C levels in adults without increasing hypoglycemia and can reduce glycemic excursions in children. Glycemic improvements are correlated with frequency of CGM use across all ages. (A) Additional Considerations for Pediatrics Children should have additional blood glucose checks if the parent/caregiver is concerned that the child’s behavior may be due to low/high blood glucose levels. (E) School employees and caregivers should be knowledgeable about SMBG and equipped with all necessary supplies. (E) Capable children should be permitted to self-manage their diabetes at school. (E) A1C Testing A1C reflects average glycemia over 2–3 months (57) and strongly predicts diabetes complications (43,61). Thus, A1C testing should be performed routinely in all patients with diabetes at initial assessment and as part of continuing care. A1C is a convenient method to track diabetes control; however, there are disadvantages. Glycation rates, and thus A1C levels, may vary with patients’ race/ethnicity. However, this is controversial. Additionally, anemias, hemoglobinopathies, and situations of abnormal red cell turnover affect A1C (42). A1C measurements approximately every 3 months determine whether a patient’s glycemic targets have been reached and maintained. For any individual patient, the frequency of A1C testing should be dependent on the clinical situation, the treatment regimen used, and the clinician’s judgment. Unstable or highly intensively managed patients (e.g., pregnant type 1 diabetic women) may require more frequent testing than every 3 months (62). In patients with hemoglobinopathies that interfere with the A1C assay or with hemolytic anemia or other conditions that shorten the red blood cell life span, the A1C may not accurately reflect glycemic control or correlate well with SMBG testing results. In such conditions, fructosamine may be considered as a substitute measure of long-term (average over 2 weeks) glycemic control. Recommendations Perform the A1C test quarterly in most patients with type 1 diabetes and more frequently as clinically indicated (i.e., pregnancy). (A) Point-of-care A1C testing, using a DCCT standardized assay, may provide an opportunity for more timely treatment changes. (E) Insulin Therapy The DCCT clearly showed that intensive insulin therapy, defined as three or more injections per day of insulin or continuous subcutaneous insulin infusion (CSII) (or insulin pump therapy), was a key part of improved glycemia and better outcomes (43,63). The study was carried out with short- and intermediate-acting human insulins. Despite better microvascular outcomes, intensive insulin therapy was associated with a high rate of severe hypoglycemia (62 episodes per 100 patient-years of therapy). Since the completion of the DCCT, a number of rapid-acting and long-acting insulin analogs have been developed. These analogs are associated with less hypoglycemia than human insulin while offering the same amount of A1C lowering in people with type 1 diabetes (64,65). The Sensor-Augmented Pump Therapy for A1C Reduction (STAR 3) study was a large (n = 485) randomized clinical trial comparing insulin pump therapy and CGM with insulin injections in youth and adults with type 1 diabetes. The two study groups started with the same baseline A1C of 8.3%. After 1 year, the group using insulin pump therapy and CGM had lower A1C levels (7.5% vs. 8.1%, P 18 years) showed A1C reductions of ∼0.3–0.4% (77,78). In both studies, a greater proportion of participants achieved an A1C target of 600 mg/dL, serum osmolality >330 mOsm/kg, and no significant ketosis and acidosis) because patients with HHS typically are severely dehydrated and require more aggressive fluid management. There are multiple guidelines available for the management of DKA (84). Recommendations Individuals and caregivers of individuals with type 1 diabetes should be educated and reminded annually how to prevent DKA, including a review of sick-day rules and the critical importance of always administering insulin and monitoring both glucose and ketone levels. (B) Insulin omission is the major cause of DKA; therefore, individuals with type 1 diabetes must have access to an uninterrupted supply of insulin. (E) Patients with type 1 diabetes and their families should have around-the-clock access to medical advice and support to assist with sick-day management. (C) Standard protocols for DKA treatment should be available in emergency departments and hospitals. (E) CVD Screening and Treatment Much of the existing data on the risk of CVD in individuals with diabetes is based on people with type 2 diabetes who often have additional CVD risk factors, such as metabolic syndrome, hypertension, and dyslipidemia. How much is applicable to people with type 1 diabetes is unknown. However, people with type 1 diabetes are at increased risk for CVD, particularly those with additional risk factors. In type 1 diabetes, standard risk factors apply, such as hyperlipidemia, hypertension, age, family history, smoking, weight, and presence of albuminuria. As such, these should be considered when determining the need for evaluation and treatment for CVD. However, even in the absence of classic risk factors, there may be high CVD risk. An adult with childhood-onset type 1 diabetes of 20-year duration has a substantially increased risk of coronary artery disease of 1% per year (83), thus meriting high-intensity statin therapy according to the new joint American College of Cardiology/American Heart Association guidelines (≥7.5% 10-year risk) (85). In some cases, measurement of coronary artery calcification may be a helpful method for determining CVD risk (86). Here, as with all management issues for people with type 1 diabetes, providers need to individualize assessment and treatment options. With regard to treatment, statin therapy is the preferred treatment for lipid lowering/CVD risk reduction (85). The Heart Protection Study (HPS) did include type 1 diabetic participants who appeared to experience the same degree of benefit from statins as others in the study, though the finding was not statistically significant due to low numbers (87). Unfortunately, there are no blood pressure intervention trials with CVD end points in type 1 diabetes and only one LDL cholesterol–lowering trial (85). Statin and aspirin therapy (if not contraindicated) should be considered and used as is individually indicated. Recommendations Therapy for those under age 40 years with less than a 20-year diabetes duration (or over age 75 years) should be considered on an individual basis, though, depending on overall risk, an LDL cholesterol <100 mg/dL has been suggested as an appropriate goal with statin intervention for those with LDL cholesterol levels of 130–160 mg/dL. (E) Individuals with type 1 diabetes aged 40–75 years may benefit from moderate-to-intensive statin therapy with consideration of diabetes duration and CVD risk factors. If 10-year risk is estimated to be ≥7.5%, then intensive statin therapy should be considered. (B) Specific Settings and Populations Pregnancy Preconception Counseling and Care To minimize risks associated with pregnancy and type 1 diabetes, preconception counseling and care are critical. Preconception care with tight glycemic control improves outcomes including lower cesarean rates (88), decreased perinatal mortality (89–91), and decreased congenital malformations (89–97). Although there is some evidence that childbearing may be reduced (98–100), in general, fertility should be assumed to be normal, and all young women with type 1 diabetes should receive preconception counseling covering diabetes and general topics, including use of prenatal vitamin, discontinuation of potentially teratogenic medications, and the importance of glycemic control to reduce the risk of congenital malformations. Pregnancy Type 1 diabetes affects approximately 0.1–0.2% of all pregnancies (101). During pregnancy, there are substantial changes in maternal insulin sensitivity that may cause profound changes in insulin requirements. Whereas insulin resistance increases markedly during the second and third trimesters, a greater proportion of total daily insulin dose must be given prandially and a lower proportion used to cover basal metabolic requirements (102). Pregnant women with type 1 diabetes require meticulous glycemic management by experts trained in obstetrics, endocrinology, and maternal-fetal medicine. Women who are planning pregnancy or who are pregnant may need to test blood glucose levels frequently (often 10 or more times daily) to reach and maintain a near-normal A1C level without excessive hypoglycemia. Severe hypoglycemia may occur early during pregnancy (102). This is followed by periods of insulin resistance and subsequent hyperglycemia if the increased insulin needs are not met. Therefore, health care providers must be vigilant and frequently adjust insulin dosing throughout gestation. In a pregnancy complicated by diabetes and chronic hypertension, target blood pressure goals of systolic blood pressure 110–129 mmHg and diastolic blood pressure 65–79 mmHg are reasonable. Lower blood pressure levels may be associated with impaired fetal growth (Table 8). ACE inhibitors and angiotensin receptor blockers are contraindicated during pregnancy because they may have adverse effects on the fetus. Antihypertensive drugs known to be effective and safe in pregnancy include methyldopa, labetalol, diltiazem, clonidine, and prazosin. Table 8 ADA Standards of Care optimal targets in pregnancy* Target maternal glucose†  Fasting 60–99 mg/dL  Peak postprandial 100–129 mg/dL  Mean <100 mg/dL  Labor and delivery 80–110 mg/dL (mean <100)   Insulin drips + D10 50 cc/h  A1C Preconception <7% and as close to normal as possible without significant hypoglycemia During pregnancy <6% * See refs. 70, 103, and 104. † These represent the mean +2 SD for normal. They are targets, but not everyone can achieve them. There is certainly marked variability, which explains why there is greater incidence of large-for-gestational-age infants in patients with type 1 diabetes. Eye examinations should occur in the first trimester with close follow-up throughout pregnancy and for 1 year postpartum because of the risk of rapid retinopathy progression during pregnancy. Those with progressive retinopathy should have more frequent screening by an ophthalmologist experienced in retinopathy management. See the American Diabetes Association/JDRF Type 1 Diabetes Sourcebook (70) for a summary of pregnancy recommendations. The prevalence of Hashimoto thyroiditis may be as high as 31% in women with type 1 diabetes (105). Therefore, all pregnant women with type 1 diabetes should be screened for thyroid disease early in pregnancy. Recommendations Starting at puberty, preconception counseling should be incorporated into routine diabetes clinic visits for all adolescents and women of childbearing potential, and appropriate birth control techniques should be discussed with women who do not desire pregnancy. (C) As most pregnancies are unplanned, consider the potential risks and benefits of medications that are contraindicated in pregnancy in all adolescents and women of childbearing potential and counsel women using such medications accordingly. (E) Such medications should be evaluated prior to conception, as drugs commonly used to treat diabetes and its complications may be contraindicated or not recommended in pregnancy, including statins, ACE inhibitors, angiotensin receptor blockers, and most noninsulin therapies. (B) Prenatal vitamins with folate should be started with preconception planning to reduce the risk for birth defects. (B) All pregnant women with type 1 diabetes should be screened for thyroid disease early in pregnancy. (B) Women contemplating pregnancy should be evaluated and, if indicated, treated for diabetic retinopathy, nephropathy, neuropathy, and CVD. (B) A1C levels should be as close to normal as possible (<7%) before conception is attempted. (B) Nutritional intake should be optimized and included in preconception planning according to general pregnancy guidelines. (E) Inpatient Management and Outpatient Procedures Management of individuals with type 1 diabetes in the hospital and in preparation for scheduled outpatient procedures often differs from that of individuals with type 2 diabetes. The challenges include difficulties associated with fasting, maintaining a consistent source of carbohydrate, and facilitating inpatient blood glucose management while modifying scheduled insulin therapy. Outpatient procedures should be performed with the awareness that individuals with type 1 diabetes may have difficulty fasting for long periods of time (more than 10 h) prior to a procedure. Patients with type 1 diabetes should be prepared with a treatment plan for insulin dose adjustments and oral glucose intake prior to any procedure that requires alterations in dietary intake and/or fasting. It is imperative that the entire health care team, including anesthesiologists and surgeons as well as other specialists who perform procedures, understands type 1 diabetes and how it factors into the comprehensive delivery of care. From a practical perspective, this means that people with type 1 diabetes will be at high risk for hypoglycemia during prolonged fasting and are at risk for ketosis if insulin is inappropriately withheld. Once under anesthesia, individuals with type 1 diabetes must be carefully monitored for hypoglycemia and hyperglycemia. For some individuals, once the most acute phase of an illness has resolved or improved, patients may be able to self-administer their prior multiple-dose or CSII insulin regimen under the guidance of hospital personnel who are knowledgeable in glycemic management. Individuals managed with insulin pumps and/or multiple-dose regimens with carbohydrate counting and correction dosing may be allowed to manage their own diabetes if this is what they desire, once they are capable of doing so. Recommendations All patients admitted to the hospital should have type 1 diabetes clearly identified in the medical record. (E) SMBG should be ordered to fit the patient’s usual insulin regimen with modifications as needed based on clinical status. (E) Goals for blood glucose levels are the same as for people with type 2 diabetes or hospital-related hyperglycemia. (E) A plan for preventing and treating hypoglycemia should be established for each patient. (E) Insulin dosing adjustments should be made in the perioperative period and inpatient setting with consideration of changes in oral intake, recent blood glucose trends, and the need for uninterrupted basal insulin to prevent hyperglycemia and ketoacidosis, with adjustment of the long-acting insulin or basal insulin requirement to reflect true basal requirements, insofar as they may be anticipated. (B) Child Care and Schools Because a large portion of a child’s day may be spent in school and/or in the child care setting, close communication with and cooperation of the school or day care personnel is essential for optimal diabetes management, safety, and maximal academic opportunities. Child care personnel and school staff should receive training to provide diabetes care in the absence of a school nurse or licensed health care professional. Able and willing school staff members should be taught the principles of diabetes management and trained to provide needed care for the child according to the ADA’s Safe at School program (see the ADA position statement on diabetes care in the school and day care setting [106] for further discussion). Young children often lack the motor, cognitive, and communication skills and abilities to manage their diabetes and completely depend on adult caregivers. The management priority for younger children is the prevention, recognition, and treatment of hypoglycemia and marked hyperglycemia. Students with diabetes should receive proper diabetes management in school, with as little disruption to the school and child’s routine as possible. Whenever possible, the student should have the opportunity to self-manage by performing blood glucose monitoring, using CGM (if utilized), administering insulin, having access to meals/snacks, managing hypoglycemia (with trained personnel prepared to provide glucagon treatment, if required) and hyperglycemia, and participating fully in all school-sponsored activities (Table 9). Table 9 Diabetes care tasks for school personnel Diabetes care tasks Signs* Treatment Outcome if not treated Hypoglycemia recognition and treatment Catecholamine effect (sweating, jitteriness, tachycardia, and palpitations) or neuroglycopenia (behavior change) Glucose, wait 15 min, recheck, give food if blood glucose is adequate (based on DMMP) Seizure or coma Know when and how to give glucagon Know when to contact parents or emergency medical services Have all contact information available on emergency plan Hyperglycemia recognition and treatment Polyuria, polydipsia (most common), difficulty concentrating, headache, or irritability Rapid- or short-acting insulin Check for ketones. Follow directions for ketones if positive to avoid ketoacidosis Dose and frequency should be clearly elucidated on emergency plan to avoid “insulin stacking” and consequent hypoglycemia (DMMP) Insulin dosing technique (syringe/vial, pens, pumps) Insulin required (DMMP) Ketone checks and when to call parents Correction factor calculations and insulin for hyperglycemia and ketones DMMP, Diabetes Medical Management Plan. * Varies among individuals but consistent within a given child. Camps A diabetes camp is an ideal place for children and youth to have an enjoyable camp experience and receive peer support from other children with diabetes under close medical oversight. The goals for campers are to learn to cope more effectively with diabetes, learn self-management skills to gain more independence, and share experiences with other young people with diabetes. The camp medical director is responsible for the diabetes management of the children. A registered dietitian oversees dietary planning at camp. Medical directors and staff should have expertise in managing type 1 diabetes and must receive training concerning routine diabetes management and treatment of diabetes-related emergencies at camp. Staff must follow universal precautions including Occupational Safety and Health Administration (OSHA) regulations, Clinical Laboratory Improvement Amendments (CLIA) standards, and state regulations (107). Diabetes in the Workplace There are practical and legal issues related to diabetes in the workplace. Employers and employees with diabetes should work together to find solutions and educate themselves about the rights of individuals with diabetes. Individuals with diabetes are responsible for having all necessary diabetes supplies, eating properly, and being aware of safety issues and regulations at work. The Americans with Disabilities Act states that most employers must provide “reasonable accommodations” to allow an individual with diabetes to safely and successfully perform a job, unless doing so would place an “undue burden” on the employer. We refer the reader to ADA position statement on diabetes and employment for additional information (108) and to the relevant section of the American Diabetes Association/JDRF Type 1 Diabetes Sourcebook (70). Older Adults Older individuals with type 1 diabetes are unique in that they have lived for many years with a complex disease. Not all older adults are alike: some may continue a rigorous regimen, with tighter control, while others may require less stringent targets. Along with age-related conditions, older adults may develop diabetes-related complications, which make managing type 1 diabetes more challenging. Providers should be aware that insulin dosing errors, meal planning, and physical activities must be properly managed in older adults. Severe hyperglycemia can lead to symptoms of dehydration and hyperglycemic crises. While chronic hyperglycemia is detrimental, hypoglycemia may be more of a concern in some older adults. Declining cognition may contribute to hypoglycemia unawareness or the inability to safely manage hypoglycemia when it occurs. An individualized approach that includes the reassessment of prior targets may be warranted. We refer the reader to the ADA consensus report “Diabetes in Older Adults” (54). Even though this report focuses primarily on the type 2 diabetic population, there is significant overlap in the comorbidities and complications experienced by the older type 1 and type 2 diabetic populations. Special Population Groups Although type 1 diabetes is increasing in several ethnic and racial groups, it remains less common in people of non-European descent. A better understanding of the unique pathophysiology of type 1 diabetes is needed. In addition, multidisciplinary diabetes teams should receive training to properly address the diverse cultural needs of these populations and to optimize health care delivery, improve glycemic control, and prevent complications. Additionally, there is a need for approaches to reduce health disparities and improve outcomes in racial/ethnic minorities and in the underserved population with type 1 diabetes (70). Developing Countries: The Global Epidemic Type 1 diabetes is an increasing global public health burden. The demands of daily management, chronicity of the disease, potential complications, paucity of diabetes specialists, and rising incidence are challenging in the U.S., but these issues, including the considerable cost of management, are crippling for those in the developing world. International organizations play a major role in improving care for individuals with type 1 diabetes in the developing world, but implementable, cost-saving, and sustainable strategies are needed to make such programs successful (70). Show more