Type 1 Diabetes in Children and Adolescents Joseph Wolfsdorf Division of Endocrinology Boston Children s Hospital Harvard Medical School joseph.wolfsdorf@childrens.harvard.edu
I have no relevant financial interest to disclose
Educational Objectives 1. Management of type 1 diabetes in children and adolescents occurs in a developmental context 2. Insulin resistance normally occurs during puberty 3. Active parental/family involvement and support contributes to better glycemic control during adolescence
National Diabetes Statistics <20 years Prevalence is increasing SEARCH study from 2001 to 2009 21% T1D 30.5% T2D Dabelea et al JAMA 2014;311:1778 Estimated prevalence in US 208,000 T1D + T2D 0.24% or 1/400 population 1st degree relative with T1D ~5% Mayer-Davis et al NEJM 2017;376:1419 Estimated annual incidence 2011 2012 T1D 17,900 Dx annually T2D 5,300 Adjusted (for age, sex, race/ethnicity) rela ve annual incidence T1D 1.8% T2D 4.8% T2D significantly 2002 2012 particularly in minority racial and ethnic groups
Prevalence of Physician Diagnosed Type 1 Diabetes in US Youth <20 years Per 1000 3.5 3 3 2001 2009 2.5 2001 2009 2.5 2 2 1.5 1.5 1 1 0.5 0.5 0 Overall 0 4 5 9 10 14 15 19 Age years 0 White Black Hispanic Asian Pacific Islander Race/Ethnicity American Indian Data source: Dabelea et al JAMA 2014;311:1778
What Kind of Diabetes Does the Patient Have?
Characteristics of Prevalent Forms of Primary Diabetes Mellitus in Children & Adolescents Type 1 Diabetes Type 2 Diabetes Monogenic Diabetes Prevalence ~85% ~12% ~1 4% Age at onset Childhood & adolescence Puberty; rare <10 years <25 years Onset Acute severe Insidious to severe Gradual DKA at onset ~30 % ~6 % Not typical Affected relative 5% 10% 60% 90% Up to 90% Female:male 1:1 1.1 1.8:1 1:1 Inheritance Polygenic Polygenic AD HLA DR3/4 Association No association No association
Characteristics of Prevalent Forms of Primary Diabetes Mellitus in Children & Adolescents Ethnicity Insulin (C peptide) secretion Insulin sensitivity Type 1 Diabetes All, Caucasian at highest risk Decreased/absent Normal when controlled Type 2 Diabetes All Variable Decreased Monogenic Diabetes All Variably decreased Normal Insulin dependence Permanent Variable Variable Obesity No >90% Uncommon Acanthosis nigricans No Common No Islet autoantibodies Yes No No
Chronic Disease Self Management Garvey et al. Current Diabetes Reports Aug 2012
Standards of Medical Care in Diabetes 2018 Diabetes self management education and support School and child care Psychosocial issues Glycemic control Autoimmune conditions Management of cardiovascular risk factors Smoking Preconception counseling Microvascular complications Diabetes Care 2018;41(Suppl. 1):S126 S136
Pediatric Diabetes is a Team Sport Physician (pediatric endocrinologist) CDE (DNE, APN, NP) Dietitian/CDE Mental health (social worker, psychologist) Administration/care coordination Primary care physician Pharmacist School nurse, teacher, coach Day care provider Family and friends
Diabetes Self management and Education (DSME) and Support Medical regimen only effective if family/affected individual able to implement Family involvement vital throughout childhood and adolescence Patients & parents/caregivers (patients <18) should receive culturally sensitive and developmentally appropriate individualized DSME and support at diagnosis and regularly thereafter The diabetic, who knows the most, lives the longest E.P. Joslin
School and Child Care Large portion of child s day is at school Close communication with and cooperation of school or day care personnel essential for optimal diabetes management, safety, and maximal academic opportunities Refer to ADA position statements: Diabetes care in the school setting Care of young children with diabetes in the child care setting Siminerio et al Diabetes Care 2014;37:2834; Jackson et al Diabetes Care 2015;38:1958
Psychosocial Issues Mental health professionals are integral members of multidisciplinary team Encourage developmentally appropriate family involvement in diabetes management tasks Premature transfer of diabetes care to child can result in nonadherence and deterioration of glycemic control! At diagnosis and follow up visits assess psychosocial issues and family stresses Ask about social adjustment (peer relationships) & school performance Assess for diabetes related distress and depression Offer adolescents (~12 years) time by themselves
Glycemic Control Most children & adolescents should use an intensive insulin regimen (MDI or pump) Self monitor BG multiple times daily: premeal & bedtime and PRN for safety (exercise, driving, symptoms hypo /hyperglycemia) Encourage continuous glucose monitoring (CGM) whether using MDI or pump Benefit correlates with usage A1c goal <7.5% at all ages
Blood Glucose and A1c Goals for T1D Across All Pediatric Age Groups Blood glucose goal range Before meals Bedtime/overnight A1c 90 130 mg/dl 90 150 mg/dl <7.5% Lower goal (<7%) if achievable without excessive hypoglycemia Concepts in setting glycemic goals: Individualize goals; lower goals based on a benefit risk assessment Modify BG goals with frequent hypoglycemia/unawareness Measure postprandial BG when: -Discrepancy between preprandial BGs and A1C level -To assess preprandial insulin doses for basal bolus or pump regimens
Blood Glucose and A1c Goals for T1D Across All Pediatric Age Groups Blood glucose goal range Before meals Bedtime/overnight A1c 90 130 mg/dl 90 150 mg/dl <7.5 % Lower goal (<7%) if achievable without excessive hypoglycemia For some adolescents, my goal is to keep patient ALIVE, functional, out of ER and ICU, and engaged in care.
Starting Total Daily Dose (Unit/kg per day) No DKA DKA <6 years or HbA1c <7% 0.15 0.25 0.5.75 Prepubertal 0.25 0.5 0.75 1 Pubertal 0.5 0.75 1 1.2 Postpubertal 0.25 0.5 0.75 1 Consider BMI, infection, other reasons for insulin resistance
Dose Distribution Basal ~40 50% of total daily dose (TDD) Remainder for meal coverage Insulin:carbohydrate ratio 500/TDD Correction factor (insulin sensitivity) to correct BG above target (120/150 mg/dl) - 1500 rule - Approximately 1/3 of I:C ratio
Basal Bolus Insulin Regimen Morning Afternoon Evening Night Insulin effect Rapid Rapid Rapid Long acting (detemir and glargine) insulin may have to be given twice daily; degludec once daily Meals Long-acting
Pump Regimen Morning Afternoon Evening Night Bolus Bolus Bolus Basal infusion Insulin effect Meals
Insulin Pumps, BG & Ketone Meters, CGM Better Tools Technological advances have drastically altered how patients manage their diabetes
Utilization of Diabetes Technologies in T1D Exchange Clinic Registry Age group years 2-5 6-12 13-17 18-25 Pump % 63 65 58 55 CGM % 13 8 5 7 SMBG 0-3x /day 2 11 39 55 Download meter at home 1x/month* 13 17 16 9 *~2/3 patients/families reported NEVER downloading SMBG data Miller et al Diabetes Care 2015;38:971
Insulin Pump Therapy in Children Introduced ~1979 - Little initial enthusiasm Widespread use in pediatric practice past ~15 years Recognition of the importance of nearnormal BG and HbA1c Improved pumps 2011 2012 DPV Germany, Austria T1DX USA NPDA England, Wales n 26,198 13,755 14,457 Pump 41% 47% 14% HbA1c % 8.0±1.6 8.3±1.4 8.9±1.6 All 3 registries combined, n = 54,410 A1c lower pump vs. injection users: 8.0±1.2% vs. 8.5±1.7% Sherr et al Diabetologia 2016;59:87
Autoimmune Conditions Associated with T1D Assess for AI conditions associated with T1D soon after diagnosis and if symptomatic -Thyroid dysfunction: -At diagnosis ~25% thyroid autoabs - TSH when clinically stable; q1 2y -Celiac disease: - T1D Exchange 1.9% biopsy proven + 2% +ve screen (suspected CD)* - Serum IgA, tissue transglutaminase ab - repeat within 2 y of diagnosis; again after 5 y *Craig et al. Diabetes Care 2017;40:1034
Manage CV Risk Factors Hypertension - Measure BP at each routine visit Dyslipidemia - Obtain lipid profile 10 y, soon after diagnosis and after glucose control has been established Smoking - Elicit smoking history - Discourage smoking - Encourage smokers to quit
Microvascular Complications Diabetic kidney disease -Annual screening for albuminuria at puberty or age 10 y, whichever is earlier, AND once child has had DM for 5 y Random spot urine albumin:creatinine ratio Retinopathy -Initial dilated eye exam after 3 5 y, provided age 10 y or puberty has started, whichever is earlier Thereafter, follow up every 1 2 years Neuropathy -Consider annual foot exam at start puberty or age 10 y, whichever is earlier, AND once youth has had DM for 5 y
Mean A1c Levels by Age T1D Exchange clinic registry; data from 16,057 participants 76 pediatric and adult diabetes specialty centers in the US Annual update 9/2013 12/2014; most recent A1c % Meeting ADA Target 35 30 <7.5% <7% 30 29 25 23 22 20 17 15 14 10 5 Mean A1c 9.0% in 13-17 age group only slightly lower than 9.5% at start of DCCT in 1983 (J Pediatr 1994;125:177) 0 2 5 (236) 6 12 (3313) 13 17 (4914) 18 25 (2867) 26 49 (2606) 50 (2125) Age Miller et al. Diabetes Care 2015;38:971
Adolescence Period between start of puberty & adulthood Great physical and psychological changes Rapid growth and sexual maturation Ongoing identity formation Powerful influences of social context and peer relationships
Adolescence & Type 1 Diabetes Special challenges related to diabetes self care and glycemic control Glycemic control often deteriorates Physiological changes: insulin resistance during puberty Developmental & psychosocial factors may adherence to diabetes care tasks Shift in responsibility from parent to child Effect of peer and romantic relationships risk taking behaviors
NEJM 1986;315:215 These data suggest that insulin resistance occurs during puberty in both normal children and children with diabetes. The combined adverse effects of puberty and diabetes on insulin action may help explain why control of glycemia is so difficult to achieve in adolescent patients.
Developmental Factors in Management of Diabetes 14-17 years independence, more time with friends exposure to risks; more risk taking (for social acceptance) Less willing to work with parents 18 years Often leave home with little preparation for independence A stage of transitions - Economic, geographic, social, emotional Distractions focus on diabetes Transition to adult care; gaps in follow-up
Providing Diabetes Care for Adolescents Provide non judgmental support Try to ease the burden Minimize intrusion into their lives Individually tailor treatment regimens Keep them engaged in care (return visits)
MH 21 yr F; T1D since 9 yr Omnipod Dexcom CGM HbA1c 6.4% BMI 23.1 kg/m 2 No severe hypoglycemia No complications
Health Care Transition The planned, purposeful movement of young adults from child centered to adult oriented health care systems Lack of effective transition may lead to fragmentation of care and increased risk for adverse outcomes in T1D Goal is to provide high quality, developmentallyappropriate health services without interruption Gaps exist between recommendations and practice Blum J Adol Health 1993
A Young Adult Patient 1 Age 11 presented with classic symptoms; no DKA; A1c 15.6%; GAD and IAA positive 11 5/12 started pump therapy 11 8/12 screening +ve IgA TTG; 11 10/12 endoscopy and biopsy confirmed celiac disease Low self esteem, depression, poor school performance 20 7/12 obese, A1c 9.7% 23 (no follow up for 2 5/12 years) Pump broke, obtained replacement ±2 months ago, but had no record of settings; did not call for advice CC: having bad lows
A Young Adult Patient 2 Age 23; BMI 35.5 kg/m 2 Pump settings Basal 3.85 units per hour (92.4 per day) Carb ratio 10 Sensitivity 40 BG target 100 (low) 200 (high) Active insulin time 4 hours Average TDD 93.9±6.2 (0.92 U/kg) 96% basal
A Young Adult Patient 3
A Young Adult Patient 4
Age at Transition to Adult Care Many countries transition is mandated by age 18 U.S. no mandated transition age; mean age 19 21 Observational studies suggest worse deterioration of glycemic control in young adults receiving adult care compared to those still receiving pediatric care No established best practice regarding transition age; further research and consensus needed Meanwhile, retain in pediatric/adolescent clinics with familiar care providers Nakhla Pediatrics 2009;129:e1134; Garvey Diabetes Care 2012; Lyons JCEM 2013;98:4639
Common Qualitative Themes Common themes emerge in qualitative studies of T1D patient transition from different countries (US, UK, Australia) Emotional attachment to pediatric providers Cultural differences between pediatric and adult care environments N = 299 pre transition young adults in T1D Exchange Garvey et al Diabetes Care 2017; 40:317 Dovey Pearce, Health Soc Care 2005; Hilliard Diabetes Care 2014; Ritholz Diabetes Educator 2014; Visentin J Clin Nurs 2006
Qualitative Study of Post Transition Patient Post Transition Focus Groups, n = 26 5 Groups (n = 26) Age 26.2 ± 2.5 years Multidisciplinary thematic analysis Perspectives Theme: Unexpected Differences between Pediatric & Adult Systems I didn t really understand that it would be different I didn t have any warning... it was so shocking at that first visit. I remember feeling that I was one of the only type 1 s in the room, and it felt like the focus was on type 2. The complications you don t see them as much when you re seeing your childhood doctor I remember the first time I came, I hate to say it but you see a lot more complications it s so scary. Garvey et al Adol Health Med Ther 2014
My Approach Continue to manage until patient clearly shows s/he is behaving as an adult