Henry Rodriguez, M.D.

9/21/2011

Prevalence and Incidence of Type 1 Diabetes: Global

The Young Adult with Type 1 Diabetes: Opportunities to Improve Transition of Care

2010 International Diabetes Federation Estimates

Henry Rodriguez, M.D. Professor of Pediatrics University of South Florida College of Medicine Clinical Director, USF Diabetes Center

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A pproximately 480,000/1.9 billion children aged 0-14 years

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Increasing at 3% per annum

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76,000 new diagnoses per year

Type 1 Diabetes in the US 

15,000 US youth diagnosed with type 1 diabetes annually 

1 9 per 100,000 per year

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3,700 youth diagnosed with type 2 diabetes annually

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Tens of thousands are believed to be transitioning annually.

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5 .3 per 100,000 per year.

Search for Diabetes in Youth, 2003-2003 data.

Attainment of Adulthood

Adolescents are a Vulnerable Population In DCCT: 1. Intensively managed subjects had a 3-fold increase in risk of severe hypoglycemia. 2. Compared with intensively treated adults, adolescents had :  

H igher Hgb A1c levels vs. similarly treated adults (8.1 vs. 7 .1%). A 60% increase in the r isk of severe hypoglycemia (86 vs. 5 4 events per 100 pt. years).

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E Erikson, circa 1950: post high school= young adults

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JJ A rnett (2000 & 2004): Emerging adulthood – Based on interviews & questionnaires of heterogeneous gr oup of 18-30 year-olds.

Davis, EA, et al: Impact of improved glycemic control on rates of hypoglycemia in insulin dependent diabetes mellitus. Arch Dis Child, 1998. 78(2):111-5.

Type 1 Diabetes Mellitus; An Update

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Henry Rodriguez, M.D.

9/21/2011

Changing Demographics 2 1 yo in 1970 • Married

Emerging Adulthood: 5 Main Features Identity exploration

1.

2 1 yo in 2004

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•Not married until late 20’s.

Instability

2. −

•Parent or expecting

•No children until late 20’s – early 30’s

•Education completed

•Education ongoing

A ge of “feeling in-between”

1. −

•Changes in employment & residence

Multiple relationships, highly mobile.

Self-focused age

3.

•Settled into long-term employment

Trying various options, esp. relationships & employment.

Neither adolescent nor adult.

A ge of possibilities.

2. Arnett JJ.: Emerging adulthood. A theory of development from the late teens through the twenties. American Psychologist. 55(5):469-80, 2000 May

Arnett JJ.: Emerging adulthood. A theory of development from the late teens through the twenties. American Psychologist. 55(5):469-80, 2000 May

.

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Psychosocial Issues

Management Challenges in the Young Adult   

– 1/3 of adolescents with type 1 DM suffer from psychiatric disorders

Shift of support group away from family and towards self and peers. Loss of support by pediatric diabetes team and shift to different care model. Feeling of invincibility and participation in highrisk behaviors

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Shift of geographical locale.

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Potential loss of insurance.

– Young adults with diabetes have lower self esteem

Insulin Omission 11-year follow-up study of 234 women with type 1 diabetes. Mean age was 45 years and mean diabetes duration was 28 years at follow-up: −

Mean age : 45 yrs

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Mean duration of diabetes at follow-up: 28 yrs

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71 women (30%) reported insulin restriction at baseline.

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Insulin restriction conveyed a 3-fold increased risk of mortality (26 women died during follow-up). −

Those that died reported more frequent insulin omission and more eating disorder symptoms at baseline.

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Mean age of death was younger for insulin restrictors (45 vs. 58 years).

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Insulin omitters reported higher rates of nephropathy and podiatry concerns at f/u.

Goebel-Fabbri AE, Fikkan J, Franko DL, et al. Insulin restriction and associated morbidity and mortality in women with type 1 diabetes. Diabetes Care. 2008;31:415-419.

Type 1 Diabetes Mellitus; An Update

Depr ession leads to worsening glycemic control

– Diabetic youth, particularly females are at increased risk for eating disorders

– A lcohol, illicit drugs, driving, sexual activity. 

M ostly internalizing symptoms

– Diabetic youth have greater rates of depression

Retinopathy German registry study at University of Ulm

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       

N=4 41 median age: 15.5 yrs. M edian duration of diabetes: 6.3 yrs. 1 9% on BID NPH/Reg, 42% on TID injections, 40% on Q ID injections M edian duration prior to dx of NPDR: 16.6 yrs. Shor test duration prior to dx of NPDR: 2 .2 yrs. Y oungest child with NPDR: 5.5 yrs. T hose with pre-pubertal onset developed DR a median of 1 0.9 yrs. after puberty compared to 15.1 yrs. with pubertal onset of DM.

Holl, RW, et al: Diabetic retinopathy in pediatric patients with type-1 diabetes: effect of diabetes duration, prepubertal and pubertal onset of diabetes, and metabolic control. J Pediatr, 1998. 132(5):790-4.

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Henry Rodriguez, M.D.

9/21/2011

Society for Adolescent Medicine Statement on Transition & ISPAD Guidelines 

The pediatric care provider should, – In par tnership with the family: 

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A ge of transfer: – Ranges from 15.9 to 19.8 yrs.

Develop an up-to-date written transition plan to coordinate subspecialty care, addressing developmental, psychosocial, & vocational needs. Ensure affordable, comprehensive health insurance into adulthood.

– C ollaborate with adult care providers to develop best pr actices for management of adults with diseases of childhood. 

Current State of Transfers

Combined clinics where possible.

(Busse et al, 2007; Eiser et al, 1993; Frank, 1996; Holmes-Walker et al, 2007; Orr et al, 1996; Pacaud et al, 1996, 2005; Salami et al, 1986; Sparud-Lundi n et al, 2008; Vidal et al, 2004)

– 3 7% of 18-25 year-olds still seen in pediatric clinics (de Beaufort et al, 2010)

– 2 2% of young adults with disabilities uninsured (Callahan & Cooper, 2007)

Rosen, DS, et al: Transition to Health Care for Adolescents and Young Adults with Chronic Conditions: Position Statement of the Society for Adolescent Medicine. Journal of Adolescent Health 2003; 33 Court JM, Cameron FJ, Berg -Kelly K, Swift PG. Diabetes in adolescence. International Society for Pediatric and Adolescent Diabetes (ISPAD) Clinical Practice Consensus Guidelines 2006 -2007. Pediatr Diabetes. 2008;9:255 -262 .

Research on Transition Programs 

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Generally, descriptions of single programs without evaluation or retrospective comparisons. No randomized controlled studies. Programs largely based on scant empirical findings of problems – Have multiple components without clear theoretical basis

Current Transition Outcomes Canadian survey of 154 young adults with type 1 transferring from a pediatric diabetes program in a children’ s hospital to adult care: −

Mean age at questioning: 20.5 yrs

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Mean age at diagnosis: 8.9 yrs

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24% left their pediatric program without a referral

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31% had a lapse of 6-12 months in their diabetes care

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11% were lost to follow-up

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52% either experienced a problem, had a lapse of care of >12 months, or had no

current diabetes care.

Pacaud D, et al. Problems in transition from pediatric care to adult care for individuals with diabetes. Canadian Journal of Diabetes. 2005;29:13-18.

Comparison of Structured vs. Unstructured Transition 

Retr ospective examination of 62 adolescents and young adults transferred from the pediatric to adult diabetes ser vice of the same hospital. – Program  Unstructured (1994-99): letter  Structured (2000-4): transition coordinator, communication of expectation of transfer, coordination and continuity of HCP, last visit without parents. – Outcomes  Significantly more of unstructured group had: – break in care. – longer time interval between last pediatric and 1st adult care visit.  Only 31% of unstructured group seen w/i 1 yr. vs. 100% of structured group. 

Structured group had more clinic attendance and improved A1c at 1 year.

Cadario, F, et al: Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach. Clinical Endocrinology (2009) 71, 346–350.

Type 1 Diabetes Mellitus; An Update

2005-6 National Health Survey National telephone survey of 40,804 families with SHCN youth under the age of 18: – 52% of families with SHCN youth ages 12-17 years stated their youth had not received the supports needed to make appropriate transitions to adult health care, work and independence

Regarding actions by their primary care providers: – 50.7 % talked with them about having their child eventually see health care providers who treat adults

– 46.2% talked with them about the health care needs as their child becomes an adult – 21.3% discussed with them how to obtain or keep some type of health insurance coverage as their child becomes an adult www.cshcndata.com

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Henry Rodriguez, M.D.

9/21/2011

Role of Pediatric Care Team 1.

Prepare adolescent/ young adult for transition. A ssist patient in goal-setting. A ssist in identification of support network. A ssist in selection of adult care provider.

a) b) c) −

2.

3. 4.

P r ovide for re-training of those diagnosed at early age.

Prepare summary of diabetes history Seek patient feedback (exit interview) regarding process. −

1 2

P r ovide care geared to the needs of the young adult. Discuss practice logistics & access to team members.

3 4

Review pediatric history including course of diabetes, insulin regimen, laboratory results and potential early complications. Review goals of therapy.

5 6

Discuss options. Discuss potential obstacles to optimal care.

Agree on specific individual and directly assist in making appt.

Knowledge/skill deficit assessment. a)

Role of Adult Care Team

Consider scheduling a final pediatric visit after the first adult visit.

Screening Recommendations : Pediatrics Activity

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Identify and address knowledge/skill deficits.

For mulate management plan.

Screening Recommendations : Adults Activity

Schedule

Routine eye exam

Annually ≥ 10 yrs., Diabetes x 3-5 yrs.

Urine microalbumin

Annually ≥ 10 yrs., Diabetes x 5 yrs.

Fasting Lipids

+ Family History: age > 2 yrs. -Family History: age ≥ 10 yrs. If lipids abnormal: repeat annually If normal: every 5 yrs.

Anti-tissue transglutaminase or anti-endomysial antibodies

Measure if symptoms suggest Celiac dz.

Thyroid function tests

At diagnosis and every 1-2 yrs.

Blood pressure monitoring

Measure at routine visits.

ADA. Standards of medical care in diabetes — 2009. Diabetes Care. 2009;32:S13-S61.

Achieving Optimum Transition

Schedule

Routine eye exam

Annually

Urine microalbumin

Annually

Fasting Lipids

Annually Every 2 years in those with low-risk lipid profiles.

Distal symmetric polyneuropathy testing

Annually

Blood pressure monitoring

Measure at routine visits.

ADA. Standards of medical care in diabetes — 2009. Diabetes Care. 2009;32:S13-S61.

Transition Resources

Pediatric Setting

Adult Setting

Identify adult care providers that will accept transitioning patients. -ongoing communication is critical Develop a transition policy. -share with providers, staff, youth & families

Determine that the practice wishes to cater to young adult patients.

“Supporting the Healthcare Transition from

Develop a privacy & consent policy -share with providers, staff, youth & families

Develop a list of current & future transition candidates.

Develop process for accepting transitioning patients

Clinical report of the: American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP), And the American College of Physicians (ACP)

http://www.gottransition.org/Uploaded Files/Files/HCTClinicalReporteversion27 June2011.pdf

National Healthcare Transition Center

http://www.gottransition.org/

Florida Health and Transition Services

www.floirdahats.org

National Diabetes Education Program

www.YourDiabetesInfo.org/transition

Prepare a transition curriculum that includes: Process should include: -Checklist of skills to master -Assessment of skills -Timeline -Readiness Assessment -Readiness Assessment -Transition summary/package -Transition summary/package Identify a transition coordinator that will: Establish & maintain communication with -Assist in coordinating “handoff” referring provider to continually assess & ADA. Standards of medical in diabetes — 2009. Diabetes Care.process.. 2009;32:S13-S61. -Serve as a liaison for pt.care & the adult provider. improve

Type 1 Diabetes Mellitus; An Update

Resource

Location

Pediatrics Vol. 128 No. 1 July 2011, pp. Adolescence to Adulthood in the Medical Home” 182-200

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Henry Rodriguez, M.D.

Transitions: Online Tool

www.YourDiabetesInfo.org/transitions

9/21/2011

NDEP Focus Groups on Website 

39 young adults with T1DM (avg. age 22.5 yrs.) – – – –

9 6% thought checklist would be helpful 9 6% thought timeline was realistic M ost useful topic: T1DM in college > 9 0% thought following links would be helpful  

T1DM in college Find a physician, CDE, dietitian, etc.

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Visit to adult HCP Preventing crises

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Driving, pregnancy, alcohol, tobacco

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National Diabetes Education Program www.YourDiabetesInfo.org • 1-888-693-NDEP A joint program of NIH and CDC

Transitions: Resource List

Transitions: Checklist

National Diabetes Education Program www.YourDiabetesInfo.org • 1-888-693-NDEP A joint program of NIH and CDC

National Diabetes Education Program www.YourDiabetesInfo.org • 1-888-693-NDEP A joint program of NIH and CDC

Transitions: Clinical Summary Page • Collaborative program of the Florida Department of Health, Children’s Medical Services Network, Florida Developmental Disabilities Council, and other partners throughout the state. Mission: To ensure successful transition from pediatric to adult health care for all youth and young adults in Florida, including those with disabilities, chronic health conditions or other special health care needs. •FloridaHATS “For Healthcare Providers” web page: http://www.floridahats.org/?page_id=608

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Healthcare Transition Training Program Transition Assessment’ Medical Summary Forms General Checklists & Care Plans • Condition-Specific Checklists & Care Plans →Diabetes › NDEP › U. of Wisconsin “Keys to Independence: Diabetes”

National Diabetes Education Program www.YourDiabetesInfo.org • 1-888-693-NDEP A joint program of NIH and CDC

Type 1 Diabetes Mellitus; An Update

5

Henry Rodriguez, M.D.

9/21/2011

Goals

Summary 

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The transition of diabetes care from pediatric to adult care providers is frequently disjointed and unsatisfactory for both patients and their care providers.  Barriers: psychosocial, behavioral & systemic

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 an early start (acknowledgement at dx. and no later than 14 yo.)  a timeline to facilitate progression to transition   

More concerted efforts to optimize transition are necessary.

Regular assessment of cognitive & behavioral needs Impr ove coordination of transition process A ctively incorporate advances in technology & networking in education and communication in order to facilitate diabetes management.  e.g. Websites, Facebook, MySpace, Twitter.  Portable electronic medical record.

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Type 1 Diabetes Mellitus; An Update

Develop & publish Anticipatory Guidance guidelines that emphasize self-advocacy with

C ontinue & expand multi-center collaboration to perform r andomized controlled trials to permit development of best pr actices.

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