The financial burden of poorly controlled diabetes in childhood and adolescence is not fully evident until complications occur during adulthood. In 2010, researchers estimated that the annual cost of type 1 diabetes (T1D) in the United States was $14.4 billion, including medical costs and lost income.

Prevention of diabetes-related complications requires that providers who care for children and adolescents with diabetes address barriers to good control soon after diagnosis and at frequent intervals as patients progress developmentally.

As a self-management disease, diabetes requires patients to adjust their insulin regimens based on blood glucose patterns they have recognized (in relation to exercise, illness, type of foods eaten, etc). This requires the synthesis of information from different sources and depends upon cognitive function and attention to detail. Even with the most advanced technology (insulin pumps, continuous glucose monitors, and hybrid closed loop systems), neurodevelopmental and behavioral issues can interfere with a child’s ability to master diabetes self-management skills.

Prevalence of Mental Health Issues in Pediatrics

  The prevalence of mental health issues in the general pediatric population is high, increasing in frequency from childhood through adolescence. Data from the National Health and Nutrition Examination Survey show that the 12-month prevalence of mental health disorders for children aged 8-15 years is 13.1%. The National Institute of Mental Health indicates that the lifetime prevalence of mental health disorders in children aged 13-18 years is 46.2%, with the lifetime prevalence of “severe disorders” being 21.4%.

 In decreasing order of frequency, this grouping of mental health disorders includes:

• Attention-deficit hyperactivity disorder

Prevalence of Mental Health Issues in Pediatric Diabetes

  An increased risk for mental health disorders has been well recognized in adults with diabetes.

 Although published data are mixed, larger studies and meta-analyses indicate that the prevalence of mental health disorders in children and adolescents with diabetes is higher than in those without.

 In children with mental health disorders, the task of diabetes self-management becomes more complex. Indeed, symptoms of mood disturbance and anxiety are themselves associated with increased glycated hemoglobin (A1C) levels.

  Even in the absence of a recognized mental health disorder, it is common for families to experience a significant amount of conflict as they transition the responsibilities of diabetes management from the parent to the child. Diabetes-related conflict is associated with decreased engagement in disease management, decreased adherence, and increased A1C levels.

American Diabetes Association Recommendations for Psychosocial Care in Practice

  The American Diabetes Association (ADA) recognized the important role that behavioral health plays in the successful management of diabetes. In 2016, the ADA released a position statement on psychosocial care of people with diabetes. It states, “Practitioners should identify behavioral/mental health providers, ideally those who are knowledgeable about diabetes treatment and the psychosocial aspects of diabetes, with whom they can form alliances and use for referrals in the psychosocial care of people with diabetes (PWD). Ideally, psychosocial care providers should be embedded in diabetes care settings. Shared resources such as electronic health records, management data, and patient-reported information regarding adjustment to  illness and life course issues facilitate providers’ capacity to identify and remediate psychosocial issues that impede regimen implementation and improve diabetes management and well-being.”

  The ADA listed recommendations for psychosocial care, along with the level of evidence assigned. Level A evidence comes from randomized controlled trials, level B evidence comes from well-controlled cohort studies, and level E is from expert consensus. From 

• Psychosocial care should be integrated with collaborative, patient-centered medical care and provided to all people with diabetes, with the goals of optimizing health outcomes and health-related quality of life. Evidence level: A.

• Providers should consider an assessment of symptoms of diabetes distress, depression, anxiety, disordered eating, and cognitive capacities using patient-appropriate standardized/ validated tools at the initial visit, at periodic intervals, and when there is a change in disease, treatment, or life circumstance. Including caregivers and family members in this assessment is  recommended. Evidence level: B.

• Consider monitoring patient performance of self-management behaviors as well as psychosocial factors impacting the person’s self-management. Evidence level: E.

• Consider assessment of life circumstances that can affect physical and psychological health outcomes and their incorporation into intervention strategies. Evidence level: E.

• Addressing psychosocial problems upon identification is recommended. If an intervention cannot be initiated during the visit when the problem is identified, a follow-up visit or referral to a qualified behavioral healthcare provider may be scheduled during that visit. Evidence level: E.

  It has been shown that behavioral interventions can improve regimen adherence and glycemic control, decreasing A1C levels by at least 0.5%,

which significantly reduces risk for long-term complications.

 Interventions that target modifiable diabetes-related emotional or family processes and those that include training in problem-solving skills

  Decreasing the A1C level and, in turn, the rate of complications, will reduce the financial burden of T1D over time. It has also been shown that multisystemic treatment can decrease resource utilization in the present.

  Numerous barriers prevent the delivery of behavioral healthcare. When practices refer patients elsewhere for care, only 50% follow through with making an appointment, and fewer remain engaged.

• The stigma attached to seeing a mental health professional

• Difficulty identifying a provider who is familiar with diabetes

• Need for prior authorizations for visits when coverage does exist

• Lack of communication between the mental health professional and the referring provider

  In a recent report from the Mental Health Issues of Diabetes conference,

 a lack of trained mental health professionals who are knowledgeable about mental health issues as they relate to diabetes was identified as a significant barrier. To that end, another group recommended increased clinical training programs for mental health providers focusing on the mental health needs of young people with diabetes as well as continuing medical education programs for endocrinologists on mental health topics to foster an integration of mental and physical healthcare for patients with T1D.

The integration of behavioral health into the medical setting is advocated to remove some of the existing barriers to achieving the goals enumerated by the ADA. This model can help reduce the stigma attached to referrals and is associated with an increase in the number of appointments made after referral. Additionally, it strengthens the routine behavioral care that can be offered to patients and families.

  However, there are barriers that persist even when practices use the onsite integrated behavioral healthcare model. These barriers are mostly related to the financial feasibility of the model. Billing for services is complex, and rules vary by state and by individual payer contracts. Psychiatric issues considered secondary to medical conditions cannot be billed under psychiatric coverage. Medicare has officially recognized behavioral medicine interventions for the treatment of a variety of medical disorders, outside of mental health disorders. This resulted in the creation of Health and Behavioral Assessment (HBA) codes in January 2002.

These codes are used to bill for services provided when a patient’s behavioral function is affecting a health problem, as long as the patient’s diagnosis is not a psychiatric one (the patient may have a co-existing psychiatric diagnosis but the visit being billed should address their medical illness). Their use requires a physical health diagnosis using International Classification of Diseases, Tenth Revision, Clinical Modification (not Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition). Diabetes is among the diagnoses recognized as being responsive to behavioral interventions.

Health and behavior assessments (91650: initial assessment; 96151: repeat assessment) might include evaluation of patient adherence to medical treatment, management of symptoms, adherence to medical treatment, management of symptoms, health-promoting behaviors, health-related risk-taking behaviors, and adjustment to physical illness.

Interventions (96152: individual; 96153: group; 96154: family with patient; 96155: family without patient) might include teaching self-monitoring, cognitive behavioral techniques, relaxation, visualization, coping and social skills, communication and conflict resolution, smoking cessation, relapse prevention, and diet and exercise, as prescribed by a physician.

HBA codes may be used by social workers, psychologists, or other nonphysician providers, but they must be within the scope of practice of the provider. Use of these codes does not require documentation of history, examination, or medical decision-making.

These providers may also render more complex services that are better suited to billing an evaluation and management (E&M) code. HBA codes should not be used when providing an E&M service on the same day. However, these codes may be used if another medical provider has seen the patient prior to the intervention, though this must be clearly noted in the medical record and the Current Procedural Technology code must be amended with an “S” (for “same day”).  

  The management of diabetes in children and adolescents requires intensive psychosocial surveillance and interventions. While the cost of providing this care has been a barrier in the past, the reduction in resource utilization in the immediate and long term will decrease the economic burden of diabetes. Therefore, clinical practices should work together with their state’s Medicaid programs and private payers to develop contracts for payment that will enable onsite integrated behavioral health programs to exist. 

  Mary Pat Gallagher, MD, a pediatric endocrinologist, is the first director of the Robert I. Grossman, MD, and Elisabeth J. Cohen, MD, Pediatric Diabetes Center at NYU Langone Medical Center, New York, New York. 

1. Tao B, Pietropaolo M, Atkinson M, Schatz D, Taylor D. Estimating the cost of type 1 diabetes in the U.S.: a propensity score matching method. PLoS One. 2010;5(7):e11501. doi: 10.1371/journal.pone.0011501.

2. Perez KM, Patel NJ, Lord JH, et al. Executive function in adolescents with type 1 diabetes: relationship to adherence, glycemic control, and psychosocial outcomes. J Pediatr Psychol. 2016. pii: jsw093. doi: 10.1093/jpepsy/jsw093.

3. Merikangas KR, He J, Burstein M, et al. Lifetime prevalence of mental disorders in U.S. adolescents: results from the National Comorbidity Survey Replication—Adolescent Supplement (NCS-A). J Am Acad Child Adolesc Psychiatry. 2010;49(10):980-989. doi: 10.1016/j.jaac.2010.05.017.

4. Peyrot M, Rubin RR, Lauritzen T, Snoek FJ, Matthews DR, Skovlund SE. Psychosocial problems and barriers to improved diabetes management: results of the cross-national Diabetes Attitudes, Wishes and Needs (DAWN) Study. Diabet Med. 2005;22(10):1379-1385. doi: 10.1111/j.1464-5491.2005.01644.x.

5. Butwicka A, Frisén L, Almqvist C, Zethelius B, Lichtenstein P. Risks of psychiatric disorders and suicide attempts in children and adolescents with type 1 diabetes: a population-based cohort study. Diabetes Care. 2015;38(3):453-459. doi: 10.2337/dc14-0262.

6. Lawrence JM, Standiford DA, Loots B, et al; SEARCH for Diabetes in Youth study. Prevalence and correlates of depressed mood among youth with diabetes: the SEARCH for Diabetes in Youth study. Pediatrics. 2006;117(4):1348-1358. doi: 10.1542/peds.2005-1398.

7. Reynolds KA, Helgeson VS. Children with diabetes compared to peers: depressed? distressed? A meta-analytic review. Ann Behav Med. 2011;42(1):29-41. doi: 10.1007/s12160-011-9262-4. Review.

8. Lustman PJ, Anderson RJ, Freedland KE, de Groot M, Carney RM, Clouse RE. Depression and poor glycemic control: a meta-analytic review of the literature. Diabetes Care. 2000;23(7):934-942.

9. Gonzalez JS. Depression. In: Peters A, Laffel L, eds. Type 1 Diabetes Sourcebook. Alexandria, VA: American Diabetes Association; 2013:169-179.

10. McGrady ME, Hommel KA. Targeting health behaviors to reduce health care costs in pediatric psychology: descriptive review and recommendations. J Pediatr Psychol. 2016;41(8):835-848. doi: https://doi.org/10.1093/jpepsy/jsv083

11. Strandberg RB, Graue M, Wentzel-Larsen T, Peyrot M, Thordarson HB, Rokne B. Longitudinal relationship between diabetes-specific emotional distress and follow-up HbA1c in adults with type 1 diabetes mellitus. Diabet Med. 2015;32(10):1304-1310. doi: 10.1111/dme.12781.

12. Young-Hyman D, de Groot M, Hill-Briggs F, Gonzalez JS, Hood K, Peyrot M. Psychosocial care for people with diabetes: a position statement of the American Diabetes Association. Diabetes Care. 2016;39(12):2126-2140. doi: 10.2337/dc16-2053. Review.

13. Hampson SE, Skinner TC, Hart J, et al. Behavioral interventions for adolescents with type 1 diabetes: how effective are they? Diabetes Care. 2000;23(9):1416-1422.

Articles

Evidence-Based Diabetes Management

The American Diabetes Association recently recognized the important role that psychosocial care plays in diabetes management. Addressing behavioral health needs at all stages of development in youth with diabetes is critical.

Mental Health Care in Pediatric Diabetes: Overcoming Challenges and Barriers

As chief of the Pediatric, Adolescent, and Young Adult Section of Joslin Diabetes Center, Lori Laffel, MD, MPH, has more than quadrupled the department’s size and established it as a major center for both treatment and research. During this time, she has maintained a busy clinical practice and performed dozens of clinical trials designed to evaluate the efficacy of everything from new technology for automatic blood sugar management to new strategies for increased treatment adherence. Her achievements have won her widespread recognition as an important innovator in the treatment of type 1 diabetes and formal honors such as the American Diabetes Association’s 2015 Outstanding Physician Clinician Award.

  I pursue a diverse array of clinical investigations, but they all share the common goal of improving both clinical and psychosocial outcomes for pediatric, adolescent, and young adult patients with diabetes. I have worked with many collaborators locally, nationally, and internationally to explore ways to optimize disease management and outcomes, from dietary and exercise interventions to the design, implementation, and evaluation of new diabetes technologies. My team and I also spend a lot of time creating and evaluating educational programs and interventions designed to improve support for young persons with diabetes and their families. Research shows the benefits of a carefully orchestrated approach to diabetes management, one that starts with disease education and realistic expectations and relies upon positive support rather than blame and shame. Motivating family members to provide that support, particularly during the transition from family care to self-care, helps patients tremendously.

Why are you so interested in the period of transition between childhood and adulthood?

  That is the period of life when disease control tends to be at its worst and, therefore, the period when patients most need better support. Blood sugar control in young children with diabetes tends to be close to goal because their parents are constantly around and providing care. There is some deterioration during the early school years and then more during adolescence. This is partially due to the fact that rapid growth during this period necessitates rapid adjustments to insulin dosing and other aspects of their treatment regimens, but an even bigger driver in this change is the transition from parental care to self-care. Glycated hemoglobin (A1C) levels actually tend to reach their highest, more than 9%, at age 19, when physical growth has already tailed off but the social and emotional challenges of transitioning from childhood to adulthood are at their highest. That number eventually falls toward 7.5%, but it takes until age 30. Anything that reduces the increase in adolescent A1C levels or enhances the improvement would be of tremendous benefit to patients in both the short run and the long run.

What does research and experience tell us about when and how the responsibility for disease management should move from parents to children?

  It’s not a jump from no self-care care to entire self-care; it’s a gradual transition. Obviously, a very young child has parents or adult caregivers who do everything, just like a young child without diabetes has parents or other adults who do everyday tasks for him or her. As the child grows, one begins to give responsibility for very small diabetes management tasks, within the child’s developmental abilities, with increasing responsibilities as the child matures. In many ways, you want to follow the normal developmental trajectory of the child as if he or she did not have diabetes. A child with diabetes should probably get to sleep over at a friend’s house or decide what to pack for lunch at about the same time a child without diabetes would be able to do such things—if there are adults willing to assist the child with diabetes management when the child is away from home. You’d have the same talk about making good choices and selecting appropriate food, but you’d also talk about how different choices would affect the amount of insulin the child would need at lunch. A good first step might be seeing that the child can remember to take a snack to guard against low blood sugar when he or she starts going off alone with friends in the neighborhood. And, of course, the child would need to be able to check blood sugar levels when away from home. And then you go from there, one step at a time.

How should diabetes professionals advise parents to 

evaluate whether kids are doing well with each step 

in this transition from parental care to self-care?

  Keeping up the dialogue within the family setting is probably the most important evaluation tool. That does not mean diabetes should be the only topic of conversation, or even the first topic of conversation, every time the child comes home from school. Diabetes management is obviously very important, but parents should not focus on it so much that children grow to think their disease is the most important thing in their lives. Parents should start by asking about the stuff that’s important for all kids: how was the math test? How was the soccer game? But they do need to find out how their children are caring for themselves in addition to the other stuff, so they do need to ask questions about self-care: what was your blood sugar reading at lunch? It’s also important to track the results of actual blood sugar tests. Continuous glucose monitors obviously give parents very complete glucose (sugar) data, especially when parents can stay connected remotely via mobile apps. Blood sugar levels, either episodically by finger-stick or continuous glucose levels using continuous glucose monitors, can indicate deteriorating diabetes disease control between clinic appointments with diabetes providers and before the A1C has time to rise.

But parents cannot do it alone. Healthcare professionals are a vital component in monitoring the transition to self-care. We recommend that children be seen at 3-month intervals. This would be true even with perfect adherence to treatment protocols because growth throughout childhood and especially during adolescence requires frequent changes to treatment regimens, and check-ups provide a huge amount of information about disease control, particularly when children are regularly seeing a whole team of caregivers: pediatric endocrinologists, pediatric nurses, pediatric dietitians, pediatric counselors and social workers, among others—like exercise physiologists. Also, every child needs eye exams, but it is particularly important for children with diabetes. The keys are making sure that health care visits are child-centered and offer family support. It can be very hard for patients and families to avoid “diabetes burnout” when it comes to diabetes care, so it is incredibly important to keep coming in every 3 months for visits, year in and year out.

How much potential is there for currently approved technology to improve diabetes care?

 Insulin pumps and continuous glucose monitors, while improving all the time, are able to offer real benefits to patients in their current forms. The FDA has recently approved the first hybrid closed loop system that takes data from a continuous glucose monitor and uses the data to make some automatic adjustments to a connected insulin pump.

 The device still requires a lot of work from patients, who must calibrate the continuous glucose monitor and provide information about carbohydrates and confirm bolus dosing, but it does automate some of the work, and such devices will almost certainly improve glucose control overnight.

Mobile applications that are designed to help people manage their diabetes can also be very helpful. Many patients get good results from programs that help them estimate the number of carbohydrates in a meal by comparing the size of portions they’re eating with pictures of food. Even something as simple as an automated text message that reminds people to check their blood sugar levels at particular times of day can make a difference. We have studied that approach and found that it can reduce A1C levels in certain subsets of patients.   The thing about technology is that it should be considered within the context of an individual patient’s needs. We have talked for years about individualized care, and technology is definitely an area where that comes into play. Technology that works brilliantly for some persons may be challenges for others to use and potentially add burden to their self-care. Technology’s effectiveness can diminish over time, for example, as text message reminders may be helpful for a few weeks or a few months but then the effect may wane as patients tire from the constant reminders. That’s an example of the burnout effect again. Diabetes care can wear people down, so we need to be innovative in our interventions and our approaches, and continually try different approaches that meet patients’ needs. In other words, we need to keep coming up with new ways to keep patients and their families active and engaged.

What are the biggest limitations of today’s technology?

  New technology can certainly improve outcomes, but it may not make self-care easier for every patient. It can actually add more work and potential burden to our patients and families, as I noted before. So, it is important to consider when and if to introduce a new diabetes technology to a patient and family, carefully reviewing the time that would allow the patient and family to eagerly accept the extra time to learn a new management approach. Here are some examples of the extra work. When one uses a continuous glucose monitor, there is the need to insert the sensor, calibrate it against finger-stick glucose values, make sure that the alarms and alerts are set appropriately, and make sure that the data are downloaded and reviewed regularly and shared with the healthcare team appropriately. If one uses an insulin pump, there is a need to make sure that the infusion sites are changed and rotated appropriately, that the insulin reservoirs are filled appropriately, and that the insulin doses are selected appropriately. Every technology we have today—even those that are beginning to automate insulin delivery, all outstanding advances&mdash;still require effort from the person with diabetes or from the family member who is helping to support the care of that person.   Fortunately, a lot has improved. We are in an era when some of the technology that’s available to patients can reduce some burden&mdash;if you start using this, you can stop doing that. For example, if you use a continuous glucose monitor with the right regulatory approval, you can use the glucose data as a replacement for finger-stick glucose checks to make diabetes management decisions.

 If your continuous glucose monitoring device is calibrated appropriately, you can make management decisions directly from the readings produced by that device. You still have to calibrate the system at least twice a day with finger-stick glucose levels, but you may not have to check 6, 8, or 10 times a day as you once did.

What can providers do to inspire patients to put in 

the effort required to use technology effectively and 

The most important thing is setting realistic expectations. Patients have to know up front about the limitations of technologies and about the extra effort that may be required to use the technologies properly. It is also important to provide optimism as treatments are getting better and self-care will get easier because technology performance keeps getting better. It is worth putting in the extra effort for better health outcomes today as the future will bring tremendous improvements, likely with more automation and therefore less need for extensive self-care. And, we are always hopeful for biologic advances in addition to the advances we are seeing with diabetes devices and automated insulin delivery systems. We want our patients to remain healthy today and tomorrow so they can access the advances on the horizon. Our hope and optimism can be effective tools in motivating patients in their self-care and to keep them coming back for routine check-ups at the optimal intervals. The patients will see that each new appointment may bring some new tool or approach to help them manage their condition and improve their quality of life.

What research are you most excited about?

 At this point in time, we are performing a lot of research in automated insulin delivery systems for automated glucose control, using systems that combine the data from a continuous glucose monitor with an insulin pump, merged together with special algorithms aimed at keeping glucose levels in range, thereby avoiding severe hypoglycemia as well as high glucose levels. These efforts appear to be especially effective overnight, and more advanced approaches in the future will be able to account better for food intake as well as stress and exercise. The current systems maintain glucose levels overnight and help control them during the day.

 Other researchers at Joslin and elsewhere are trying to tease out what leads to the autoimmune destruction that leads to the loss of the insulin-producing beta cells. Others are working to create implantable stem cells that can become insulin-producing beta cells. The 2 remarkable efforts go hand-in-hand because if one figures out what destroys the beta cells and can prevent such autoimmune destruction, then implanted new beta cells would be likely to provide long-term insulin production.

  Finally, other research efforts focus on preventing chronic complications in people with diabetes. Preserving vision and maintaining normal kidney function would provide enormous relief to people with diabetes and their family members. Recent years have witnessed tremendous opportunities to maintain vision and kidney function as long as patients continue to get routine care. Healthcare providers can identify eye and kidney problems early and at a stage when treatments can preserve function. In the future, there may be opportunities to identify genetic risk for complications, and genetic protection against complications, that would allow us to tailor diabetes management to a patient’s risk level. We have optimism today and for the future for patients with diabetes and their families. <

  1. Lori Laffel, MD, MPH, receives American Diabetes Association’s Outstanding Physician Clinician in Diabetes Award [news release]. Alexandria, VA: PR Newswire; April 29, 2015. http://www. prnewswire.com/news-releases/lori-laffel-md-mph-receives-american-diabetes-associations-outstanding-physician-clinician-in-diabetes-award-300073887.html. Accessed April 30, 2017.

  2. FDA approves first automated insulin delivery device for type 1 diabetes [news release]. Silver Spring, MD: FDA Newsroom; September 28, 2016. https://www.fda.gov/newsevents/newsroom/ pressannouncements/ucm522974.htm. Accessed April 30, 2017.

  3. FDA expands indication for continuous glucose monitoring system, first to replace fingerstick testing for diabetes treatment decision [news release]. Silver Spring, MD: FDA Newsroom; December 20, 2016. https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm534056.htm.Accessed April 30, 2017. 

An expert discusses her research on a critical period for patients with type 1 diabetes: moving from having parents make care decisions to taking control of disease management.

Joslin's Lori Laffel, MD, MPH, Explains the Challenge of Transitioning to Self-Care

When we talk about the rising prevalence of diabetes in youth, those outside medicine often assume we are referring to type 2 disease (T2D). Certainly, T2D and coincident obesity are rising at alarming rates; T2D in youth was rare a generation ago, but today, the effects of sedentary lifestyles, too much screen time, and poor nutrition are evident. Old assumptions about what constitutes healthy eating for children are being set aside. A good example is the recent editorial by my colleagues here at Joslin Diabetes Center—Heather A. Ferris, MD, PhD; Elvira Isganaitis, MD, MPH; and Florence Brown, MD&mdash;called for an end to juice in the Special Supplemental Nutrition Program for Women, Infants, and Children.

™ we discuss results from the first decade of the SEARCH study, which has found an increase in diabetes among youth. But it is not just T2D; type 1 diabetes (T1D), which gets less attention, is on the rise, too, and it is increasing among populations not historically associated with the disease.

 SEARCH also showed us that youth are developing complications of diabetes at younger ages. These trends raise many new questions that ongoing studies will explore, according to Barbara Linder, MD, PhD, of the National Institutes of Health.

In this issue, Mary Pat Gallagher, MD, of NYU Langone Medical Center, outlines the rising cost burden ($14.4 billion in 2010) of T1D, but as she explains, it is the psychosocial toll that demands greater attention, both from the diabetes care team and from the health system. As Gallagher discusses, the American Diabetes Association has brought attention to this aspect of the diabetes burden—and it is a burden&mdash;by endorsing a position statement on the providing high-quality psychosocial care that meets individual patient needs. Psychosocial care is not widely available and not accessed enough, in part because it is poorly reimbursed. Support for people living with diabetes must be ongoing through all of life’s stages.

Is there hope in better insulin pumps, improved continuous glucose monitors (CGMs), and the promise of an artificial pancreas? Of course, there is. Better tools and apps are wonderful, but they can also be overwhelming and burdensome, especially at first. As my colleague Lori Laffel, MD, MPH, shares in this issue, it is essential to manage expectations. Young adults may not always seek more information. Technology only helps if it is used (or if insurance companies pay). Clinical trials have shown us that CGMs are effective when used—but adherence in young people is often limited, and we need to understand why that happens.

  Finally, there is the challenge of diabetes care for young people that can never come from an app, a gadget, or a pill. Learning to take responsibility for one’s own care, to help parents let go, and to be the person asking questions at the doctor’s appointment, is perhaps the most difficult part of learning to live with T1D. Evidence tells us this period is the time when young people with T1D have the worst glycemic control. Joslin and other health systems have programs for youth to help transition from pediatric to adult care, but these programs need to be more robust and ubiquitous. Our payment systems must support interaction on digital platforms—because this is what youth want.

  For all the new tools that we have in diabetes care, the most important one for helping young people is the most basic: our ability to listen.

  1. Ferris HA, Isganaitis E, Brown F. Time for an end to juice in the special supplemental nutrition program for women, infants, and children [published online April 24, 2017]. JAMA Pediatr. doi: 10.1001/jamapediatrics.2017.0134.

  2. Mayer-Davis EJ, Lawrence JM, Dabelea D, et al. Incidence trends of type 1 and type 2 diabetes among youths, 2002-2012. N Engl J Med. 2017;376(15):1419-1429. doi: 10.1056/NEJMoa1610187.

  3. Rates of new diagnosed cases of type 1 and type 2 diabetes on the rise among children, teens [press release]. Bethesda, MD: NIH newsroom; April 13, 2017. www.nih.gov/news-events/news-releases/rates-new-diagnosed-cases-type-1-type-2-diabetes-rise-among-children-teens. Accessed May 26, 2017. 

Understanding What the Young Person With Diabetes Needs

Results from the first decade a major study by the CDC and the National Institutes of Health (NIH) show diabetes incidence is rising rapidly among US youth, but especially among racial and ethnic minorities. 

  The findings from the Search for Diabetes in Youth Study (SEARCH), which began in 2000 and will continue until at least 2020,

) in mid-April,2 and were consistent with a claims study reported by FAIR Health earlier this year.

  The study is the first to analyze trends in new cases of both type 1 diabetes (T1D) and type 2 diabetes (T2D) among US youth younger than age 20 across 5 ethnic groups: non-Hispanic whites, non-Hispanic blacks, Hispanics, Asian Americans/Pacific Islanders, and Native Americans.

  While the findings were not quite a surprise, the gap in disease incidence among ethnic groups, and the trends in the Hispanic population in particular, demand policy responses and increased levels of research, according to several experts who contacted 

The current findings report data from 2002-2003 to 2011-2012, and found the unadjusted incidence of T1D cases rose significantly by about 1.4% per year, but rates varied by demographic characteristics. For instance, new cases increased much more among boys than girls. After adjusting for age, sex, and race or ethnic group, the researchers found a 1.8% relative annual increase in T1D incidence. They also found that Hispanic youths had a significantly higher increase in new T1D cases per year (4.2%) compared with white youths (1.2%).

T1D is known to be caused by a combination of genetic and environmental factors, according to Jessica Dunne, MD, director of Discovery Research for JDRF. The rise in cases of T1D in ethnic  groups beyond those Northern European countries associated with the disease suggests that the genetics could be changing, “or that there is a larger interplay of what those environmental factors may be,” Dunne said in an interview with 

  When looking at unadjusted T2D incidence, the researchers observed a 7.1% increase in new cases each year among youths aged 10 to 19. After adjusting for demographics, they found white youths had a significantly lower increase in incidence compared with each of the other ethnic or racial groups. In other comparisons, Native Americans had a significantly higher average increase in incidence  rates at 8.9% than Hispanics at 3.1%, but the CDC press release cautioned that the sample of Native American youths in this study was not representative of all Native American youths nationwide.

  According to study authors, the findings, particularly those concerning T1D, indicate that racial and ethnic minorities are shouldering most of the burden of increasing youth diabetes rates. As such, the results “highlight the critical need to identify approaches to reduce disparities among racial and ethnic groups.”

SEARCH found that obesity had increased among Hispanic girls and black boys from 2003 to 2012, but had not increased for American youths overall. Along with further research on insulin resistance in children of different races and ethnicity, the researchers suggested that these disparities in risk factors like obesity might provide an opportunity to control the growing numbers of children developing diabetes, which the CDC described as a serious public health concern.

“Because of the early age of onset and longer diabetes duration, youth are at risk for developing diabetes related complications at a younger age. This profoundly lessens their quality of life, shortens their life expectancy, and increases health care costs,” Giuseppina Imperatore, MD, PhD, epidemiologist in CDC’s division of diabetes translation, National Center for Chronic Disease Prevention and Health Promotion, said in a statement.

  Ongoing efforts to clarify the drivers of diabetes rates include The Environmental Determinants of Diabetes in the Young (TEDDY) study

 and the Treatment Options for Type 2 Diabetes in Adolescents and Youth (TODAY) study.

 In addition to funding projects like TEDDY and TODAY that target the youth population, NIH is also conducting initiatives such as the Type 1 Diabetes TrialNet, which collects outcomes data and conducts research on preventing diabetes in Americans of all ages.

  Dunne said diabetes researchers are waiting for the data from TEDDY to better understand what the viral triggers are that lead to the development of T1D. The overall rise of diabetes in the Hispanic and African American population suggests a complex mix of environmental factors are at work. “There hasn’t been a single smoking gun, and I don’t anticipate there will be,” she said.

  William T. Cefalu, MD, chief scientific and medical officer for the American Diabetes Association, said in an email that the SEARCH study and another study in the 

 April 13, 2017, issue, “Mortality and cardiovascular disease in type 1 and type 2 diabetes,”7 highlight both “the concerns about the increasing prevalence of diabetes, and the positive impact of research in managing the disease.”

  “Seeing the rate of diagnosis rise among youth should draw everyone’s attention to this epidemic,” he said. “At the same time, we’ve been able to improve the lives of millions of people who are living with diabetes around the world through research leading to fewer incidences of complications.”

  Ted Kyle, RPh, MBA, founder of ConscienHealth and an advocate for people living with obesity, said in an email that while the 

 articles did not include assessments for body mass index, there was little doubt that the current, historically high levels of childhood obesity—especially severe obesity&mdash;“will contribute to further growth of type 2 diabetes for years to come. The best hope for blunting this trend is better utilization of evidence-based obesity care, such as the Diabetes Prevention Program.”

  Kyle called for health plans to make smarter use of both diabetes prevention and obesity care for at-risk populations.

1. Search for Diabetes in Youth website. https://www.searchfordiabetes.org/dspHome.cfm. Accessed May 16, 2017.

2. Mayer-Davis EJ, Lawrence JM, Dabelea D, et al. Incidence trends of type 1 and type 2 diabetes among youths, 2002-2012. N Engl J Med. 2017; 376(15):1419-1429. doi: 10.1056/NEJMoa1610187.  

3. Rates of new diagnosed cases of type 1 and type 2 diabetes on the rise among children, teens [press release]. Atlanta, GA: CDC Newsroom; April 12, 2017. https://www.cdc.gov/media/releases/ 2017/p0412-diabtes-rates.html. Accessed April 13, 2017.

	4. The Environmental Determinants of Diabetes in the Young (TEDDY) Study website. https://teddy.epi.usf.edu/TEDDY/index.htm. Accessed May 16, 2017.

	5. Linder BL, Fradkin JE, Rodgers GP. The TODAY study: an NIH perspective on its implications for research. Diabetes Care. 2013;36(6):1775-1776. doi: 10.2337/dc13-0707.

	6. TrialNet website. https://www.trialnet.org/. Accessed May 16, 2017.

	7. Rawshani A, Rawshani A, Franzen S, et al. Mortality and cardiovascular disease in type 1 and type 2 diabetes. N Engl J Med. 2017;376:1407-1418. DOI: 10.1056/NEJMoa1608664.

The gap in disease incidence among ethnic groups demands a policy response, say experts who weighed in on the SEARCH data.

Diabetes Rates Rise Among US Youth, Especially Minorities

Mississippi may lead the nation in prevalence of diabetes,

 but several initiatives are moving us closer to the top in terms of fighting it among our youth and adults.

It is estimated that 41.8% of school-aged children and youth in Mississippi are overweight or obese.

 The reasons for this are varied: household financial constraints that prohibit purchase of fresh fruit, vegetables, and proteins; lack of access to these items in rural areas; poor dietary habits; failure to take advantage of school breakfast and lunch programs; limited physical activity; and increased time in front of a television, tablet, or phone.

Thanks to a grant from the National Governors Association under the Healthy Kids, Healthy America Program, Mississippi conducted an extensive study and developed an action plan of implementable policies to curb the rate of obesity and diabetes in our children.

 The program, Preventing Obesity with Every Resource (POWER), resulted in then-Governor Haley Barbour appointing a task force of 9 organizations and departments to guide these projects.

Thanks to the Child Nutrition and WIC (Women, Infants, and Children) Reauthorization Act of 2004,

 each school was required to establish a Local School Wellness Policy.This led to adoption of stricter guidelines for what can be sold in school vending machines, adoption of improved nutrition standards, and new requirements for physical education and activities.

Through the Bower Foundation, schools were awarded Five Star Foods Grants to increase consumption of fruits and vegetables through the purchase of sectionizers and slicers, which made school lunch food more attractive to students. In addition, food service managers attended chef-led training sessions. Eighty schools from 25 school districts benefited from this program.

The Bower Foundation Nutrition Integrity Grant6 helped remove fryers from school kitchens and replace them with combination oven steamers. A total of 104 steamers were purchased in 41 school districts across the state.

The Committee to Move Grant provided 25 grants totaling $9400 to 21 schools to purchase physical education equipment and resources.

 The Center for Mississippi Health Policy conducted an evaluation of these grant awards over 5 time periods from Spring 2008 to Spring 2010 to further study the relationship between fitness and academic performance. The Governor’s Commission on Physical Fitness and Sports later gave recognitions of excellence to more than 260 schools.

The TEAM Mississippi: A Partnership for Healthy Families was formed in conjunction with the University of Mississippi Medical Center. As reported in the journal Obesity, 450 children in grades 1 through 4 spent a year being educated on healthy eating habits; the results showed improvements in overall nutrition and weight and a statistically significant decrease in body fat over those who were not educated in health matters.

 Finally, through the Health in Action initiative, teachers now have free access to an online database of 1300 health and physical education lesson plans.

But many point to the passage, and funding, of the Mississippi Healthy Students Act of 2007, requiring schools to serve better and healthier meals, as a watershed moment in turning the tide on our obesity and diabetes epidemic.

• Restricting the advertising of unhealthy foods

• Increasing public service announcements for healthy foods

• Requiring state government food service to serve healthy foods

• Requiring Medicaid and private insurance to cover obesity treatments

 As a result of all of these efforts, the Center for Mississippi Policy reported that rates of overweight and obesity among students in kindergarten through fifth grade fell from 43.6% to 37.3% from 2007 to 2011.

 CDC data show our youngest children made early progress as well—obesity rates among 2- to 4-year-olds from low-income families dropped from 14.6% in 2008 to 13.9% in 2011.

the Mississippi State Medical Association

 found the combined share of overweight and obese students in kindergarten through 12th grade was 41.8% in 2013, compared with 43.9% in 2005.

 As chairman of the Mississippi Senate’s Medicaid Committee, I am acutely aware of the financial need to continue to address this problem in our youth. Estimates show that Medicaid spending would be 11.8% lower in the absence of childhood obesity. And in a time where Medicaid overages are prevalent and state budget dollars are limited, we must remain diligent on this matter.

In 2016, Mississippi announced a partnership with the Cleveland Clinic’s Endocrinology & Metabolism Institute to build a state-of-the-art research facility to address the rise in diabetes and obesity in our state (

). By bringing private sector dollars to the table, along with state funds, the National Diabetes and Obesity Research Institute (NDORI) will develop the necessary infrastructure to offer clinical research, trials, disease-based registries, and treatment-based algorithms. A 300-acre medical campus is being developed in South Mississippi around NDORI with local and regional healthcare providers, leading medical educational institutions, and state and federal agencies sharing research and training tools to help fight this epidemic and educate future healthcare providers.

 But we are not stopping there. Mississippi currently leads the nation in telemedicine and is 1 of only 7 states to receive an “A” rating from the American Telemedicine Association.

In 2015, Mississippi began one of the most aggressive research programs in the nation in the heart of the Delta through Intel-GE Care Innovations, the University of Mississippi Medical Center, and CSpire. The program treated 200 patients in the region with the most severe form of diabetes. Early results show not a single hospital readmission due to the disease and more than 10,000 miles of patient travel saved.

In 2017, Governor Phil Bryant signed into law the Health Care Collaborative Act,

 which will provide new opportunities for the University of Mississippi Medical Center to partner with rural hospitals to further expand medical services. Furthermore, the University of Mississippi Medical Center has formed partnerships to teach diabetes- and obesity-related curriculum in churches, doctors’ offices, and civic clubs throughout the state. The state now has more than 500 trained individuals who can serve as screeners for diabetes and hypertension.

However, the realities of funding Medicaid remain top of mind. The continued expansion of Medicaid, especially to able-bodied adults, has left many states, like ours, fearful of the larger share of healthcare costs that we may have to bear. By the Mississippi Division of Medicaid’s own numbers, for the last 18 months, the number of Medicaid enrollees has gone down, yet the request for state dollars has continued to climb with this year’s request totaling over $1 billion.

Managed care of Medicaid was implemented in 2014 to address these rising costs. During our 2017 legislative session, I called for the commissioning of a joint study to determine if the managed care organizations are performing as we hoped, what the savings have been if any, and what changes still need to be made. The services we provide are extensive, and necessary, to treat those who cannot help themselves and provide a safety net for our least fortunate. We need to look at whether those services are providing a return on investment by improving the health and well-being of the patients served and changing Mississippi’s poor health behavior for the long term. 

While there is hopeful talk that Congress will swiftly address Obamacare (the Affordable Care Act), I have found waiting on Congress to act is a losing proposition. The states have traditionally been the “laboratories of democracy,” where grassroots efforts can effect change. For these reasons, I thank my fellow legislators for starting the important work of determining how to responsibly take care of our Medicaid population without breaking the bank, and proactively addressing the diabetes and obesity epidemic in our state. 

State Senator Brice Wiggins, JD, is the chairman of the Mississippi Senate Medicaid Committee. A Republican from Pascagoula, Senator Wiggins has served in the Legislature since 2012. 

  1. Centers for Disease Control and Prevention. Diabetes 2014 Report Card. CDC website. https://www.cdc.gov/diabetes/pdfs/ library/diabetesreportcard2014.pdf. Published 2015. Accessed April 19, 2017.

  2. Grant T, Lott L, Courtney C, Johnson X, Sutton V, Zhang L. Obesity Action Plan 2016. Office of Health Data and Research, Mississippi State Department of Health website. http://msdh.ms.gov/msdhsite/_static/resources/6164.pdf. Published February 2016. Accessed April 19, 2017.

  3. Obesity in Mississippi: a report compiled by the POWER initiative. Office of Healthy Schools, Mississippi State Department of Health website. http://msdh.ms.gov/msdhsite/_static/resources/3593.pdf. Published 2009. Accessed April 19, 2017.

  4. Mississippi POWER (Preventing Obesity with Every Resource): case study. National Governors Association website. https://www.nga.org/files/live/sites/NGA/files/pdf/1003HEALTHYKIDSCASESTUDYMS.PDF. Accessed April 19, 2017.

  5. Child Nutrition and WIC Reauthorization Act of 2004. GovTrack website. https://www.govtrack.us/congress/bills/108/s2507/summary.

  6. The Bower Foundation. Coordinated school health. Bower Foundation website. http://www.bowerfoundation.org/school-health2.php. Accessed April 20, 2017.

  7. Governor’s Commission on Physical Fitness and Sports website. http://www.activemississippi.com/.Accessed April 20, 2017.

  8. Greening L, Harrell KT, Low AK, Fielder CE. Efficacy of a school-based childhood obesity intervention program in a rural Southern community: TEAM Mississippi Project. Obesity (Silver Spring). 2011;19(6):1213-1219. doi: 10.1038/oby.2010.329.

  9. Health in Action Lesson Plan. Mississippi Department of Education website. http://www.mde.k12.ms.us/OHS/resources/lesson-plan-website. Accessed April 20, 2017.

  10. Mississippi Healthy Students Act. Mississippi Department of Education. http://www.mde.k12.ms.us/OHS/resources/mississippi-healthy-students-act. Accessed April 20, 2017.

  11. Obesity drops among younger Mississippi students. The Mississippi Link website. http://themississippilink.com/2012/06/14/%EF%BB%BFobesity-drops-among-younger-mississippi-students/. Published June 14, 2012. Accessed April 20, 2017.

  12. Signs of progress: Mississippi. Robert Wood Johnson Foundation website. http://www.rwjf.org/en/library/articles-and-news/2013/07/mississippi--signs-of-progress.html. Published February 5, 2015. Accessed April 20, 2017.

  13. Zhang L, Kolbo JR, Kirkup M, et al. Prevalence and trends in overweight and obesity among Mississippi public school students. J Miss State Med Assoc. 2014;55(3):80-87.

  14. The National Diabetes & Obesity Research Institute launches affiliation with Cleveland Clinic, a leader in diabetes and obesity care [press release]. Tradition, MS: Globe Newswire; August 4, 2016. https://globenewswire.com/news-release/2016/08/04/861810/0/en/The-National-Diabetes-Obesity-Re¬search-Institute-Launches-Affiliation-With-Cleveland-Clinic-a-Leader-in-Diabetes-and-Obesity-Care.html. Accessed April 20, 2017.

  15. Latest industry report identifies best states for telemedicine [press release]. Washington, DC:American Telemedicine Association; February 9, 2017. https://thesource.americantelemed.org/blogs/ jessica-washington/2017/02/09/latest-industry-report-identifies-best-states-for-telemedicine?CommunityKey=a19668d d-1d45-44c2-8c38-318adc561770&tab=. Accessed April 20, 2017.

  16. Caffrey M. In Mississippi, telehealth makes a measurable difference in diabetes care. 

® website. http://www.ajmc.com/newsroom/in-mississippi-telehealth- makes-a-measurable-difference-in-diabetes-care. Published March 2, 2016. Accessed April 20, 2017.

  17. Bryant P. Governor sets record straight on health care. The Clarion-Ledger website. http://www.clarionledger.com/story/opinion/columnists/2017/03/31/governor-phil-bryant-sets-record-straighthealth-care/99868700/. Published March 31, 2017. Accessed April 20, 2017.

  18. Mississippi Medicaid: an overview and program basics. Mississippi Division of Medicaid website.https://medicaid.ms.gov/wp-content/uploads/2017/01/2017-Medicaid-Fact-Sheet.pdf. Accessed April 20, 2017. 

The chairman of the Mississippi State Senate Medicaid Committee outlines steps the state has taken to promote healthier lifestyles among children. 

Mississippi Taking Steps to Reduce Childhood Obesity

Three years after the discovery of insulin, the first camp for children with diabetes opened in 1925, with the same goals that exist today: to give children with type 1 diabetes (T1D) a summer camp experience in a medically safe environment, where they can take important steps toward self-care and form bonds with other children like themselves.

The Diabetes Education and Camping Association (DECA) reports that 20,000 children take part in camps in North America each summer

; while most have T1D, a growing number have type 2 diabetes (T2D), and DECA Executive Director Terry Ackley told 

™) in an interview, “There are conversations about how to best serve these children and their families.”  

From the start, camp served as a place where children could learn to manage their diabetes, but for decades, research on the effectiveness of camp was sporadic, ranging from surveys, to reports, to more formal studies. The oldest abstracts listed on PubMed date to the 1950s, and research picked up in the 1980s and early 1990s. In 2015, the American Diabetes Association (ADA) reported results from a 3-year study that found a 10% increase in campers confident to manage their diabetes, with the largest increase (19%) among those newly diagnosed. The ADA study also found:

• A 7% decrease in diabetes-related anger and a 6% decrease in diabetes-related sadness

• An 11% increase of overall knowledge of proper diabetes management

• A 9% increase in the number of children who knew how to figure the correct insulin dose.

Jill A. Weissberg-Benchell, PhD, CDE, professor of psychiatry and behavioral sciences at Northwestern University, and her co-authors offered a review of recent studies in a 2016 paper, Camp for Youth With Type 1 Diabetes.

While the paper cited several studies that found increased diabetes knowledge in the months right after camp, the authors saw a great need for more research on the psychosocial aspects of camp, especially the long-term benefits.

 “We know that the social support, the sense of not being alone, the shared experiences are very powerful,” Weissberg-Benchell said in an interview with 

™. When a child with T1D finally has sense that there are others that “get you,” it makes a difference, she said.

The 2016 paper called for longitudinal studies that compare quality of life, self-care, and family functioning among one-time and repeat campers.

 Separately, Weissberg-Benchell led a study published in early 2017 that surveyed parents and campers to assess how camp attendance affected diabetes-specific emotional distress, diabetes-specific quality of life, and self-care behavior.

 While the youth reported higher levels of self-care than their parents did, both parents and children agreed on a major benefit: camp is a place “where youth feel they are with others who really understand what it is like to live with diabetes.”  

This is not to be underestimated, said DECA’s Ackley, who said Weissberg-Benchell’s work is needed and welcomed. One of the greatest benefits of camp for children with diabetes, Ackley said, are the friendships that develop. Thanks to social media, children have an easier time staying in touch. “They don’t feel isolated,” he said. “The lifelong friendships that develop—really, it changes lives.”

“One of the primary benefits is that children become capable of being more independent in their diabetes care,” There are many “firsts” at diabetes camp—the first time a child injects himself with insulin, the first time changing the site of an insulin pump, the first time eating a new food. “There’s formal and informal learning that takes place,” he said.  

The surveys of parents and youth campers found that both saw exposure to new technology as a benefit of camp.

Researchers who study diabetes camps have increasingly turned to the psychosocial benefits for children who gain opportunities to be around others like themselves.

June 2017

Mental Health Care in Pediatric Diabetes: Overcoming Challenges and Barriers

Joslin's Lori Laffel, MD, MPH, Explains the Challenge of Transitioning to Self-Care

Understanding What the Young Person With Diabetes Needs

Diabetes Rates Rise Among US Youth, Especially Minorities

Mississippi Taking Steps to Reduce Childhood Obesity

Researchers Turn Attention to "Power" of Diabetes Camps

Obesity and Type 2 Diabetes in Young People: A Matter of National Concern