1. Providing Care to Adolescents and Young Adults with Type 1 Diabetes Mellitus Bryce Nelson, MD/PhD Medical Director, Division of Pediatric Endocrinology Associate Professor, Pediatrics, USCSOM-Greenville 5/15/15 Ready, Set, Transition CME Conference

2. The face of Diabetes in Youth is changing…. “Then you better start swimmin' Or you'll sink like a stone For the times they are a-changin’”

3. T1D & T2D Incidence in Youth with Diabetes by Age & Race SEARCH Study Group, JAMA 297: 2716, 2007

4. T1D incidence is rising 3-5% per year Incidence /100,000/ yr in children aged 0-14 REWERS

5. The Diabetes Rap

6. Progression and pathogenesis of T1DM 6 Genetic Predisposition Insulitis Beta-Cell Injury “Pre”-diabetes Diabetes Beta-Cell Mass Time Clinical Onset Putative Enviromental Trigger Cellular (T-cell) autoimmunity Humoral autoantibodies (ICA, IAA, Anti-GAD65, IA2AB, ZNT8, etc) Loss of first-phase insulin response (IVGT) Glucose intolerance (OGTT) Adapted from Skyler JS, Ricordi C. Diabetes. 2011;60:1-8.

7. Applied to US Census data, SEARCH estimated: 191,986 youth in the US had physician-diagnosed diabetes in 2009 – 166,984 with T1D; – 20,262 with T2D; – 4,740 with ‘other’ types ~18,400 youth are diagnosed with T1D each year ~5,100 youth are diagnosed with T2D each year Burden of Diabetes in US Youth Pettitt DJ et al., Diabetes Care 37: 2014; SEARCH Study Group, JAMA 2007; Lawrence et al, in review

8. Trends in T1D Prevalence 2001-2009 Mayer-Davis et al., Diabetes 61, Suppl 1, 2012, under review JAMA 30.4% relative increase

9. Trends in T2D Prevalence, 2001-2009 Among Youth Age 10-19 Years Dabelea, et al. Diabetes 61, Suppl 1, 2012, under review, JAMA

10. What about complications?

11. Mean HbA1c by Age Group

12. DCCT: Adolescents vs Adults Higher A1c –Intensive: 8.1% vs 7.1% –Conventional: 9.8% vs 9.0% More Hypoglycemia –Intensive: 86 vs 57/100 pt-years –Conventional: 28 vs 17/100 pt-years More DKA –Intensive: 2.8 vs 1.8/100 pt-years –Conventional: 4.7 vs 1.3/100 pt-years

13. Metabolic control tends to deteriorate during adolescence Adapted from Bryden KS et al. Diabetes Care. 2001;24(9):1536-1540. Increased insulin resistance during puberty Adolescence is marked by: –Ambivalence –Impulsiveness –Mood swings –Struggle for independence –Peer acceptance –Experimentation –Risk-taking behaviors Adolescent rebellion/experimentation may result in reduced adherence to therapy Male A1C (%) Female A1C (%) Age (Years) Mean A1C by Age

14. Increased risk of diabetes-related complications with elevated A1C in patients with T1DM 20 5 10 15 0 Relative Risk 7689101112 A1C (%) Retinopathy Nephropathy Nonproliferative/ proliferative retinopathy Neuropathy Microalbuminuria Skyler JS. Endocrinol Metab Clin North Am. 1996;25(2):243-254. Relative risks for development of complications as a function of mean A1C during DCCT follow-up

15. Prevalence of Poor Glycemic Control (A1c ≥ 9.0%) Race/EthnicityType 1 (%)Type 2 (%) Non-Hispanic White12.312.2 African-American35.522.3 Hispanic27.327.4 Asian / Pacific Islander26.036.4 Native American52.243.8 Petitti et al., J Peds, 2009

16. Prevalence of Cardiovascular Risk Factors in Youth with Diabetes MetS: > 2 CVD risk factors Rodriguez, et al, Diabetes Care, 2006

17. Prevalence of Diabetic Retinopathy: Pilot Study

18. Pediatric T1D in SC Estimates 3300 children in SC with type 1 DM as of 2013 –234-303 new diagnosed in SC each year Total expenditure ? Need to control variable expense (ER, Hospitalizations)

19. GHS Pediatric Diabetes Program Patient Visits 1021 patients (55% with SC Medicaid) with diabetes seen at least once in the last year – ~880 type 1 – ~141 type 2 – <1% other

20. Clinical Catchment Area

21. GHS Pediatric Outpatient Program

22. Pediatric Management Oversight Committee

23. ©2014 Ashfield Healthcare Communications

28. ADA-recommended glycemic treatment goals for young patients with T1DM (cont’d) Individualization –Goals should be tailored to the patient; lower goals may be appropriate based on benefit-risk assessment Risk of hypoglycemia –Blood glucose goals should be higher than those on the previous slide for children with frequent hypoglycemia or unawareness of hypoglycemia Postprandial blood glucose –Values should be measured when there is a disparity between preprandial blood glucose (BG) values and A1C levels Key concepts in setting glycemic goals: Silverstein J et al. Diabetes Care. 2005;28(1):186-212. Not actual patient

29. Young T1DM patients face competing demands that may compromise diabetes care 29 Social Occupational EducationalFinancial Emotional Garvey KC et al. Curr Diab Rep. 2012;12:533–541. Not actual patient

30. Possible predictors of poor diabetes control in adolescent patients with T1DM Bernstein CM et al. Clin Ped. 2012;52(1):10-15. Patients with a positive screen had 2x the odds of having poor glycemic control (A1C ≥8.5%) N=150; Percentage (n) Depression screen positive11.3% (17) Anxiety screen positive21.3% (32) Disordered eating screen positive20.7% (31) Had ≥1 positive screen34.7% (52) Had ≥2 positive screens14.7% (22) Reported taking less insulin than directed13.3% (20) Prevalence of Mental Health Symptoms

31. The Arnett Effect Emerging Adulthood –High levels of family support associated with better diabetes regimen adherence –Disordered eating/insulin abuse Correlation with microvascular complications –Behavior problems in adolescents predict poor diabetes control and worse complication rate

32. Eating Disorder/Insulin Misuse Diabulimia 30-35% of T1D adolescent females admitted to intentional insulin omission or reduction for weight control –Peveler et al. Diabetes Care. 2005 –Goebel-Fabbri et al. Diabetes Care. 2008

33. Diabulimia Warning Signs Unexplained rise in A1c Decreased BG monitoring Feign good compliance Mood changes Increased DKA admissions

34. Transition from Pediatric to Adult Care Challenges –Lack of empirical evidence –Differences between pediatric and adult healthcare providers (HCPs) –Difficulty in determining readiness for transition –Social and demographic changes –Health insurance gaps –Unique learning styles of emerging adults –Lack of HCP training regarding emerging adults Peters A, et al. Diabetes Care. 2011;34:2477-2485.

35. Transition from Pediatric to Adult Care Emerging Adulthood –18–30 years of age –A time of transition Geographic Economic Emotional –Many priorities – prevent focus on diabetes care –Lack of skills to manage diabetes Peters A, et al. Diabetes Care. 2011;34:2477-2485.

36. Transition from Pediatric to Adult Care “A Perfect Storm” –Differences between pediatric and adult care –Poor glycemic control –Lack of follow-up –Psychosocial issues –Sexual/reproductive issues –Alcohol, smoking, drug use –Acute and chronic complications of diabetes Peters A, et al. Diabetes Care. 2011;34:2477-2485.

37. Transition from Pediatric to Adult Care Selected Recommendations –Prepare patient for transition ahead of time –Provide written summary for adult care provider –Provide assistance for patient (eg, patient navigator) –Individualize care to patient’s developmental level –Address eating disorders and affective disorders –Screen for microvascular and macrovascular complications –Address high-risk behaviors Peters A, et al. Diabetes Care. 2011;34:2477-2485.

38. Possible Outcomes of the Transition From Pediatric to Adult Care In a Canadian survey completed by young adults with T1DM (N=154): – 24% left their pediatric clinic without being referred elsewhere – 31% had a lapse of over 6 months (but <12 months) between their last pediatric visit and their first adult visit – 11% were lost to follow-up – 52% had either experienced a problem, had a delay of >12 months between their transition of care, or had no current follow-up Pacaud D, et al. Canadian Journal of Diabetes. 2005;29:13-18

39. Outcomes of Poor Transition Care Sense of disengagement from healthcare –Young people with diabetes disengage from the system –Young people may become confused and disillusioned with the adult-care system –No specialist follow-up completed and a primary care provider is seen only for insulin prescriptions –Ultimately, an issue occurs, such as diabetic ketoacidosis or pregnancy, that cannot be managed by a non-specialist Emergence of complications may go undetected, and untreated NON-ADHERENCE loss to F/U care McGill M. Horm Res. 2002;57(suppl 1):66-68.

40. Approaches for Successful Transition Pediatric team – Begin the process during adolescence according to the developmental needs of the patient – Work with the patient and family to create a plan: – Consider patient’s/family’s needs and requests – Provide info on adult diabetes care teams – Review insurance issues – Identify adult diabetes health care teams interested in working with the young adult with diabetes – Create transition clinic days, combining pediatric and adult diabetes care team members Adult team – Interact with pediatric diabetes team – Consider needs of young adults; possibly including family members/parents as requested by patient Weissberg-Benchell J. Diabetes Care. 2007;30:2441-2446. ISPAD

41. NDEP Transition Checklist 1 to 2 years before anticipated transition to new adult care providers –Introduce the idea that transition will occur in about 1 year –Encourage shared responsibility between the young adult and family for: Making appointments Refilling prescriptions –Calling health care providers with questions or problems –Making insurance claims –Carrying insurance card –Reviewing blood sugar results with provider between visits –Discuss with teen alone: * Sexual activity and safety How smoking, drugs, and alcohol affect diabetes How depression and anxiety affect diabetes and diabetes care

42. NDEP Transition Checklist 6 to 12 months before anticipated transition –Discuss health insurance coverage and encourage family to review options Assess current health insurance plan and new options, e.g. family plan, college plan, employer plan, and healthcare.gov Consider making an appointment with a case manager or social worker Discussion of career choices in relationship to insurance issues –Encourage family to gather health information to provide to the adult care team (www.YourDiabetesInfo.org/transitions) –Review health status: diabetes control, retina (eye), kidney and nerve function, oral health, blood pressure, and lipids (cholesterol) –Discuss with teen alone: * Sexual activity and safety Smoking status, alcohol, and other drug use Issues of independence, emotional ups and downs, depression, and how to seek help

43. NDEP Transition Checklist 3 to 6 months before anticipated transition –Review the above topics –Suggest that the family find out the cost of current medication(s) –Provide information about differences between pediatric and adult health systems and what the young adult can expect at first visit Patient’s responsibilities Other possible health care team members such as a registered dietitian or diabetes educator Confidentiality/parental involvement (e.g., HIPAA Privacy Act and parents need permission from young adult to be in exam room, see test results, discuss findings with health care providers), health care proxy –Help identify next health care providers if possible or outline process –Discuss upcoming changes in living arrangements (e.g., dorms, roommates, and/or living alone)

44. NDEP Transition Checklist Last few visits –Review and remind of above health insurance changes, responsibility for self ‐ care, and link to online resources at www.YourDiabetesInfo.org/transitions –Obtain signature(s) for release for transfer of personal medical information and for pediatric care providers to talk with the new adult health care providers –Identify new adult care physician If known – request consult (if possible) and transfer records/acquire hard copy of most recent records If unknown – ask teen to inform your office when known to transfer records and request consult

45. NDEP Transition Checklist Last few visits (cont.) –Review self ‐ care issues and how to live a healthy lifestyle with diabetes Medication schedules Self ‐ monitoring of blood glucose schedule Importance of managing diabetes ABCs (A1C, blood pressure, cholesterol) Meal planning, carb counting, etc. Physical activity routine and its effects on blood glucose Crisis prevention ‐ management of hypoglycemia (low blood glucose), hyperglycemia (high blood glucose), and sick days Need for wearing/carrying diabetes identification Care of the feet Oral/dental care Need for vision and eye exams Immunizations Staying current with the latest diabetes care practice and technology Preconception care (preparing for a safe pregnancy and healthy baby)

46. NDEP Transition Checklist Last few visits (cont.) –Discuss with teen alone: * Sexual activity and safety Screening and prevention of cervical cancer and sexually transmitted infection Risk taking behaviors, e.g. tobacco/alcohol/drug use Consider ongoing visits with current diabetes educator as part of transition Suggest options for a diabetes “refresher” course http://ndep.nih.gov/transitions/ResourcesList.aspx

47. Take-Home Messages Maintaining continuity of care from pediatric to adult care is key to successful transition –Prepare patient for transition –Overlap between internist and pediatrician (bridge from pediatric to adult care) –Educate emerging adults Additional research is needed to determine best practices