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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
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’”
T1D & T2D Incidence in Youth with Diabetes by Age & Race
SEARCH Study Group, JAMA 297: 2716, 2007
T1D incidence is rising 3-5% per year
Incidence /100,000/ yr in children aged 0-14
REWERS
Progression and pathogenesis of T1DM
6
Genetic Predisposition
Insulitis Beta-
Cell Injury“Pre”-diabetes Diabetes
Beta
-Cel
l Mas
s
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.
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
0.0
0.5
1.0
1.5
2.0
2.5
3.0
3.5
2001 2009
Pre
vale
nce p
er
1,0
00
p<0.0064
Trends in T1D Prevalence2001-2009
Mayer-Davis et al. , Diabetes 61, Suppl 1, 2012, under review JAMA
30.4% relative increase
Overall Female Male 10-14 15-19 NHW AA HISP API AI0.0
0.2
0.4
0.6
0.8
1.0
1.2
1.4
2001 2009
Pre
vale
nce
per
1,00
0
p=0.0004
p<0.0001
p<0.0001
p<0.0001
35% relative in-crease
p<0.0001
p<0.0001
p<0.0001
p=0.023
Trends in T2D Prevalence, 2001-2009Among Youth Age 10-19 Years
Dabelea, et al. Diabetes 61, Suppl 1, 2012, under review, JAMA
What about complications?
Mean HbA1c by Age Group
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
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)
12
11
10
9
8
711 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26
12
11
10
9
8
711 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26
Mean A1C by Age
Increased risk of diabetes-related complications with elevated A1C in patients with T1DM
20
5
10
15
0
Rela
tive
Risk
76 8 9 10 11 12
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
Prevalence of Poor Glycemic Control (A1c ≥ 9.0%)
Race/Ethnicity Type 1 (%) Type 2 (%)
Non-Hispanic White 12.3 12.2
African-American 35.5 22.3
Hispanic 27.3 27.4
Asian / Pacific Islander 26.0 36.4
Native American 52.2 43.8
Petitti et al., J Peds, 2009
Prevalence of Cardiovascular Risk Factors in Youth with Diabetes
BP TG HDL Waist MetS0
10
20
30
40
50
60
70
80
90
100Type 1 Type 2
Per
cen
t
MetS: > 2 CVD risk factors
Rodriguez, et al, Diabetes Care, 2006
Prevalence of Diabetic Retinopathy: Pilot Study
None Min DR Mild/Mod/PDR None Min DR Mild/Mod/PDR0
0.1
0.2
0.3
0.4
0.5
0.6
0.7
0.8
0.9 n=152
25
2
15
4
0
35
7
4
20
1614
Non-Hispanic White
Pre
vale
nce
TYPE 1 diabetes TYPE 2 dia-betes
17% for T1D (n=225)49% for T2D (n=69)
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)
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
Clinical Catchment Area
GHS Pediatric Outpatient Program
Pediatric Management Oversight Committee
©2014Ashfield Healthcare
Communications
©2014Ashfield Healthcare
Communications
©2014Ashfield Healthcare
Communications
©2014Ashfield Healthcare
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©2014Ashfield Healthcare
Communications
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
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
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 oddsof having poor glycemic control (A1C ≥8.5%)
N=150;Percentage (n)
Depression screen positive 11.3% (17)
Anxiety screen positive 21.3% (32)
Disordered eating screen positive 20.7% (31)
Had ≥1 positive screen 34.7% (52)
Had ≥2 positive screens 14.7% (22)
Reported taking less insulin than directed 13.3% (20)
Prevalence of Mental Health Symptoms
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
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
Diabulimia Warning Signs
• Unexplained rise in A1c• Decreased BG monitoring• Feign good compliance• Mood changes• Increased DKA admissions
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.
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.
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.
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.
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
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.
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
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
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
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)
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
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)
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
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
