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Transitioning Care of Young Adults with Type 1 Diabetes Position Statement Conference

Transitioning Care of Young Adults with Type 1 Diabetes Position Statement Conference. Epidemiology Group Presentation March 26, 2010 Ann Albright, PhD, RD Director, Division of Diabetes Translation, NCCDPHP, CDC Jean Lawrence, ScD, MPH, MSSA Research Scientist and Epidemiologist,

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Transitioning Care of Young Adults with Type 1 Diabetes Position Statement Conference

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  1. Transitioning Care of Young Adults with Type 1 Diabetes Position Statement Conference Epidemiology Group Presentation March 26, 2010 Ann Albright, PhD, RD Director, Division of Diabetes Translation, NCCDPHP, CDC Jean Lawrence, ScD, MPH, MSSA Research Scientist and Epidemiologist, Department of Research & Evaluation, Kaiser Permanente

  2. Background & Epidemiology Recently, increases in the incidence of Type 1 diabetes has been reported worldwide

  3. Accelerating Epidemic of T1D: Predicted and Observed Incidence Rates (per 100,000 per year) 1.Onkamo P, Diabetologia 1999; 2. Harjutsalo V, Lancet 2008; 3. Patterson C, Lancet 2009; 4. Bell RA, Diabetes Care 2008; 5. Vehik K, Diabetes Care 2007

  4. Incidence of Type 1 Diabetes in Colorado, 1978-88 and 2002-04 2.7% increase per year, p< 0.0001 1.6% increase per year, p=0.01 Vehik K, et al., Diabetes Care 2007

  5. Percent Average Annual Increase in Incidence by Age Group Vehik K, et al., Diabetes Care 2007

  6. SEARCH Study Centers Seattle Children’s Hospital Cincinnati Children’s Hospital University of Colorado Kaiser Permanente Southern California American Indian sites South Carolina (coordinated at UNC-Chapel Hill) Wake Forest University Coordinating Center Pacific Research Institute Hawaii Central Laboratory, University of Washington

  7. Prevalence of Diabetes per 1,000 Youth 10-19yrs, by Race/Ethnicity and Clinical Type Non-Hispanic white = NHW; African American = AA Hispanic = H; Asian/Pacific Islander = API American Indian = AI SEARCH Study Group, Pediatrics, 2006

  8. Prevalence of Diabetes (all types) per1,000 Youth 10-19 yrs, by race/ethnicity and sex ** ** ** Non-Hispanic white = NHW; African American = AA Hispanic = H; Asian/Pacific Islander = API American Indian = AI ** Significant difference by sex SEARCH Study Group, Pediatrics, 2006

  9. Incidence of Type 1 Diabetes by Age and Race/Ethnicity Non-Hispanic white = NHW; African American = AA; Hispanic = H; Asian/Pacific Islander = API; American Indian = AI SEARCH Study Group, JAMA 2007

  10. Applied to US Census data, SEARCH estimated that 154,000 youth in the US with physician-diagnosed diabetes in 2001 15,000youth are diagnosed annually with Type 1 DM 3,700youth are diagnosed annually with Type 2 DM SEARCH Study Group, Pediatrics, 2006 SEARCH Study Group, JAMA 2007 Burden of Diabetes in US Youth

  11. Race/Ethnicity and SES

  12. Prevalence of Socioeconomic Indicators Among Youth with Type 1 Diabetes who completed a study visit, By Race/Ethnicity * ** *** SEARCH Study Group 2009 Diabetes Care Supplement Non-Hispanic white = NHW; African American = AA; Hispanic = H; Asian/Pacific Islander = API; * =55% were recruited from Health Plans ** = not reported; *** = recruited from IHS enrollees

  13. Risk Factors for Complications

  14. Prevalence of Overweight and ObesityAmong Youth with Type 1 Diabetes who completed a study visit, By Race/Ethnicity Non-Hispanic white = NHW; African American = AA; Hispanic = H; Asian/Pacific Islander = API; SEARCH Study Group 2009 Diabetes Care Supplement

  15. Prevalence of Microalbuminuria Among Youth with Type 1 Diabetes (Mean age 11.9 years) Maahs et al Diabetes Care 2007

  16. Levels of Glycemic Control in Youthwith Type 1 Diabetes “Good”: age specific HbA1c, < 6 yr, <8.5%; 6-12 yr, <8.0%; 13-18 yr, <7.5%; 19+ yr, <7.0%. “Poor”: HbA1c ≥ 9.5%. “Intermediate”: HbA1c between “good” and “poor” Petitti et al J Peds, 2010

  17. Minority Youth with Poor Glycemic Control (HbA1c > 9.5) Compared to NHW Youth Petitti D et al, J Peds, 2010

  18. Insulin Regimen for SEARCH Participants (Type 1, N=2743) Paris et al J Peds 2009

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

  20. Total Cholesterol LDL-C HDL-C Triglyceride Note: N=1,680 T1DM and 283 T2DM youth ≥10 yrs. Percent of T1DM and T2DM youth taking lipid lowering drugs are: T1DM=1% and T2DM=5%. Source: Kershnar et al. J Peds, 2006

  21. Psychosocial and Behavioral

  22. Prevalence of Selected Health BehaviorsAmong Youth  10 yrs with Type 1 Diabetes, By Race/Ethnicity Non-Hispanic white = NHW; African American = AA; Hispanic = H; Asian/Pacific Islander = API; SEARCH Study Group 2009 Diabetes Care Supplement

  23. Prevalence of Selected Health BehaviorsAmong Youth  10 yrs with Type 1 Diabetes, By Race/Ethnicity Non-Hispanic white = NHW; African American = AA; Hispanic = H; Asian/Pacific Islander = API; SEARCH Study Group 2009 Diabetes Care Supplement

  24. Prevalence of Selected Health BehaviorsAmong Youth  10 yrs with Type 1 Diabetes, By Sex N=1,422 males and1,415 females Lawrence JM et al, Diabetes Care, 2008

  25. Prevalence of Unhealthy Weight Management Behaviors Among Youth  10 yrs with Type 1 Diabetes who have Ever tried to Lose Weight, by Sex N=456 males and 742 females Lawrence JM et al, Diabetes Care, 2008

  26. Prevalence of Preexisting Diabetes per 100 Live Births by Maternal Age, Kaiser Permanente Southern California, 1999–2005 Diabetes type unknown Lawrence JM et al, Diabetes Care, 2008

  27. Mortality

  28. Mortality • Short term mortality risk in youth with diabetes may be associated with quality of care as well as socio-demographic factors, including sex, race/ethnicity, socioeconomic status, and access to health care. • Population-based studies from countries including the United Kingdom1,2, Italy3, Scandinavia4-6, Estonia and Lithuania7, and the United States8 all reported increased mortality for persons with youth-onset diabetes 1. Soedamah-Muthu SS et al. Diabetologia 2006; 2. Laing SP et al. Diabet Med 1999; 3. Bruno G et al. Nutr Metab Cardiovasc Dis 2009; 4. Skrivarhaug T et al. Diabetologia, 2006; 5. Waernbaum I et al. Diabetologia 2006; 6. Dahlquist G et al. Diabetes Care 2005; 7. Podar et al. Diabetes Care 2000

  29. Mortality • The Chicago Childhood Diabetes Registry reported that the standardized mortality ratio (SMR) of youth diagnosed with diabetes at < 18 years compared to an age-matched population in Chicago yielded a SMR of 1.90 for African Americans and 3.37 for Latinos. • Their crude case fatality ratio was 2.4% based on 24 deaths among 1,238 persons with DM (385 Latino; 852 African American) after a mean follow-up of 7.75 years • DKA was the most frequent cause of death, while deaths from cardiovascular disease, infection, trauma, and other causes were also reported. Burnet DL et al. Diabetes Care 2007

  30. Sources of and Coverage for Health Care

  31. Providers for diabetes care: Peds Endos – 75.6% NP or PA – 12.4%* Adult Endos – 5.3% GP / PCP – 4.3% Other – 2.4% Health Insurance status at study visit: Private – 80.1% Medicaid – 16.6% Other – 1.6% None – 1.7% Who provides diabetes care? Among 2,743 youth with type 1 diabetes with a mean age of 13.2±4.5 years (75% NHW, 25% other race/ethnicity) *nurse practitioners and physician assistants were most often part of a multidisciplinary team with a pediatric endocrinologist Paris et al, J Peds, 2009

  32. Insurance Coverage • In SEARCH population, the percent uninsured is very low (<2%) • In the overall population, the percent of uninsured aged 6-17 years is 12% and in those aged 18-24 is 37%

  33. Percentage of individuals without health insurance among 1,488 individuals aged 2-64 years with diagnosed diabetes, NHANES 1999-2008 Do not cite

  34. Percentage of individuals without health insurance among 1,488 individuals aged 2-64 years with type 1 diabetes, NHANES 1999-2008 Do not cite a Type 1 diabetes is defined as early onset of diabetes less than 20 years old AND beginning insulin treatment within 1 year of diagnosis.

  35. Health Insurance Consumer Protections for This Year (that may apply to transition) • Children with pre-existing conditions can no longer be denied health insurance coverage. • Health care plans will allow young people to remain on their parents' insurance policy up until their 26th birthday. • Insurance companies will be banned from dropping people from coverage when they get sick, and from implementing lifetime caps on coverage. • Adults who are uninsured because of pre-existing conditions will have access to affordable insurance through a temporary subsidized high-risk pool. Source: Nancy-Ann DeParle, Director, White House Office of Health Reform http://www.whitehouse.gov/blog/2010/03/23/whats-health-care-bill

  36. Transfer of Care

  37. Perceptions of Adolescents with Type 1 Diabetes • Transition considered a negative experience • Fundamental differences in the approaches of pediatric and adult diabetes care • Critical/vulnerable time in the adolescent’s life • Personal life • Disease management • Need for support • Social • Medical • Psychological

  38. Perceptions of Adolescents (cont) • Importance of Continuity • Frustration with provider transition • Re-explaining their medical history multiple times • Feel as if they are being juggled • Need for better communication • Patient provider • Need to facilitate communication methods (e-mail, phone) • Need for Age Appropriate Information

  39. Patient Perspectives: Potential Solutions • Transition Timing • Adequate preparation for the patient • Suggest beginning 1 year before the switch • Bridging the gap between pediatric and adult care • Patient navigator or Case Manager • Knowledgeable of policy nuances • Facilitate transition • Could be a liaison between patient and system • Transition Clinics

  40. Perceptions of Health Care Providers • Concern for adolescent patient well-being • Decrease in clinic attendance • Concern over loss of patients completely • Deterioration in metabolic control • Patient assumption that metabolic control is better than it actually is • Frustrated by (their perception of) patient apathy

  41. Perception of Providers (cont) • Need for research • Strategies to prepare adolescents for transition • Clinical governance and guidelines on transition • Evidence-based transition programs • Need for advanced preparation for transition • Did not suggest a specific age

  42. Perception of Providers (cont) • Need for integrated care • Uninterrupted, comprehensive and accessible care • Structured transition process • Collaboration is important • Patient/provider • Pediatric/adult providers • Primary Care Provider/Specialists Patients Primary Care Providers Specialty Care Providers

  43. Issues related to substance abuse including alcohol and drugs Insurance coverage Strategies to prepare adolescents for transition Clinical governance and guidelines on transition Evidence-based transition programs Research Questions and Need for Additional Data

  44. Distribution of Incident Diabetes by Race/Ethnicity, Age Group and Type 0-9 years 10-19 years SEARCH Study Group, JAMA 2007

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