Presenter

1. Exploring the Transition of CYSHCN from Pediatric to Adult CareEpidemiological Challenges and OpportunitiesMaternal and Child Health Epidemiology Conference December 11, 2003Tempe, AZ

2. Presenter John G. Reiss, PhD Chief, Div of Policy and Program Affairs Institute for Child Health Policy Associate Professor, Dept of Pediatrics and Dept of Health Policy and Epidemiology University of Florida www.ichp.edu jgr@ichp.edu 352-265-7220, ext. 86288

3. Content • Incidence and survival rates • Social and cultural changes • CSHCN National Goals • Epidemiological Challenges & Opportunities

4. Childhood Onset Chronic and Disabling Conditions: Overall Characteristics • Onset before age 21 • Specific conditions have low incidence • Diverse causes • Congenital • Related to prematurity, delivery & neonatal period • Acquired (illness & trauma) • Heterogeneous manifestations & impacts • Progressive vs. static • Constantly present or episodic (predictable?) • Invisible or visible (stigma?) • Co-morbidity - multi-system involvement

5. Incidence and Survival to Age 21 Incidence % Condition Per 1000 Survive to 21 • Asthma 20. 98% • Autism & other PDD 10. ? • Congenital Heart Disease (CHD) 5. 50% • All inborn errors of metabolism 3. varies • Hydrocephalus 3. (90% to 10 years) • CP 2. “near normal” • Kidney disease 2. ? • Hearing impairment 2. normal • Diabetes Type 11.7(life expectancy = 54 years) • Cleft Lip & Palate 1.4 normal

6. Incidence & Survival Condition Per 1000 Survive to 21 • Downs syndrome 1.2 • Without CHD (79% to 30 years) • With CHD (50% to age 30) • White 50 year life expectancy • Black & other 25 year life expectancy • Seizure Disorders 1.0 (86% to 10 years) • Neural tube defects 0.7 80% • CF 0.5 50% • Sickle Cell Disease 0.36 86%

7. Incidence & Survival Condition Per 1000 Survive to 21 • Blind/visually impaired 0.33 normal • Fragile X 0.25 normal • Muscular Dystrophy 0.14 ? • Cancer 0.13 72% survive 5 years • Hemophilia 0.10 90% • Juvenile Arthritis 0.08 ? (remission) • Crohn's Disease 0.07 normal • Ulcerative Colitis 0.07 normal • PKU 0.05 normal

8. Social & Cultural Changes • Educational & civil rights • Societal expectations • Organization, financing & delivery of health care for CSHCN

9. Background

11. Social Expectations - Age of Adulthood • At 18 – legal rights and responsibilities • At 21 – more rights and responsibilities • Not until 26 – 80% of children no longer financially dependent on family of origin Implication – extend focus of MCH to “children” up to age 26 and their families

12. Conceptualizing the Population of Children with Special Health Care Needs

13. CSHCN – Definition “Children with special health care needs are those who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type and amount beyond that required by children generally”.

14. Care for CSHCN Paradigm Shifts in Care Giving Approach Hospital/Institution-based Care of Defects Hospital & Community-base Care of Children by Professionals Community-based Care of Children and Families through Professional-Family Partnership

15. Six Core Outcomes for a Community System of Services for CSHCN &Title V Block Grant Performance Measure • Families of CSHCN participate in decision making and are satisfied with services they receive 2. CSHCN receive coordinated comprehensive care in a medical home. 3. Families of CSHCN have adequate private and/or public insurance to pay for the services they need.

16. Six Core Outcomes (cont.) 4. Children are screened early and continuously for special health care needs 5. Services for CSHCN are organized so families can use them easily 6. Youth with special needs receive services needed to make transitions to adult life, inc. adult health care, work, & independence

17. National Survey of CSHCN - 2001 National household telephone survey • Supported by HRSA; carried out by NCHS • Planned repetition in 2005 and 2010 • Produced national & state level estimates of prevalence of special health care needs and their impact on children and families • Milestone in ability to measure implementation of community-based service systems for CSHCN

18. The CSHCN Screener • Five item questionnaire that identifies: • Limitations in functional status • Ongoing use of prescription drugs • Use of specialized therapies • Use of mental health services • Elevated use of routine medical care

19. Who Is Identified by CHSCN Screener? • ALL or nearly all children with more severe or complex conditions such as cerebral palsy, cystic fibrosis, muscular dystrophy, rare metabolic disorders, mental retardation, autism, sickle cell, diabetes, etc. • ONLY those children whose asthma, ADHD, allergies, etc. result in a elevated service need

20. Prevalence and Population Estimates for CSHCN Source: Kogan, et all. A National Profile of Children with Special Health Care Needs. Panel Presentation. APHA Conference. Nov, 2003.

21. Continuum of Chronic Conditions

22. Adjusted Odds Ratio for Factors Significantly Associated with having a CSHCN Source: Kogan, et all. A National Profile of Children with Special Health Care Needs. Scientific Presentation. APHA Conference. Nov, 2003.

23. Goal #1 • Families participate in decision making and are satisfied with services • Doctors make family feel like a partner • Family is very satisfied with overall care experience Percent of CSHCN Meeting Goal: 57%

24. Goal #2 • CSHCN receive coordinated comprehensive care in a medical home • Child has a usual source of care and a personal doctor or nurse • The family experiences no problems in obtaining referrals for specialists • Effective care coordination is available when needed

25. Goal #2, continued • Doctors provide family centered care • Spend enough time • Sensitive to culture • Listen carefully • Provide needed info • Make family feel like a partner Percent of CSHCN Meeting Goal: 53%

26. Goal #3 • Families of CSHCN have adequate public and/ or private insurance for the services they need • Child has private or public health insurance at the time of the survey • Child had no gaps in coverage during past 12 months • Health insurance covers services that meet the child’s needs

27. Goal #3, continued • Costs not covered by insurance are reasonable • Health insurance permits the child to see the providers he or she needs Percent of CSHCN Meeting Goal: 60%

28. Goal #4 • All children are screened early and continuously for special health care needs 1. All children receive at least annual preventive medical visits 2. All children receive at least annual preventive dental visits Percent of Children Meeting Goal: 52%

29. Goal #5 • Services for CSHCN will be organized so families can use them easily • Services are organized for easy use Percent of CSHCN Meeting Goal: 74%

30. Goal #6 • All youth with special needs receive services needed to support the transition to adulthood • Teens receive guidance and support in the transition to adult health care • Teens receive vocational and career training to prepare for adult job Percent of Teen CSHCN Meeting Goal: 6%

31. New Freedom Initiative & Title V Core Outcomes Delivering on the Promise MCHB to develop and implement a plan to: Ensure youth with special health care needs receive services necessary to transition to all aspects of adulthood, including pediatric to adult health care, from school to employment and to independence. Block Grant Performance Measure #6 Percentage of youth with special health care needs who receive the services necessary to make transition to all aspects of adult life

32. Factors Significantly Associated with Any Unmet Need for Care Services Among CSHCN

33. "A child born with Downs Syndrome in 1949 had a 9 year life expectancy, today the life expectancy reaches to senior citizen status.” WTSB (Tampa Bay/St. Pete Channel 10 News)

34. Racial Disparities in Median Age at Death of Persons With Down Syndrome --- United States, 1968—1997, MMWR, June 08, 2001 / 50(22);463-5

35. Life Expectancy - Cystic Fibrosis Today, more than one-half of all persons with cystic fibrosis are over the age of 21.

36. Life ExpectancySickle Cell Disease

37. Adults with Congenital Heart Disease (ACHD) • An estimated 500,000 ACHD are alive in U.S., 10% of whom are expected to have complex disease • A.J. Marelli, E. Rhame and L. Pilote, Congenital heart disease: prevalence rates in a population of 5,363,695 adults abstr . J Am Coll Cardiol41 Suppl A (2003), p. 490A.

38. Epidemiological Challenges

39. Epidemiological ChallengesWhat Happens to Young Adults (18-26)? • 600,000 CSHCN turn 18 every year. • What health care services do Young Adults (YA) with SHCN receive from whom?

40. Transition to AdulthoodSpina Bifida ? ? ? ?

41. Health Care Expenditures for Children Children without Special Health Care Needs Children with Special Health Care Needs Expenditures Population

42. Health Care Expenditures: Young Adults ? Young Adults without Special Health Care Needs ? Young Adults with Special Health Care Needs Population Expenditures

43. Thrive or Just Survive? What impact does “graduating” from pediatric care have on: • Access to care? • Health status & wellbeing? • Health care utilization? • Satisfaction with care? • Adverse health outcomes? • Achievement of developmental tasks?

44. Developmental Tasks of Young Adulthood • Separate from parents • Develop a healthy self-image • Set & achieve education & vocational goals • Financial independence • Live independently • Marriage – Partnership • Participate in community life • Be happy

45. Factors Significantly Associated with Any Unmet Need for Care Services Among CSHCN

46. Barriers to Successful Transition • Adult Providers Not Trained/Available (24) • Awareness of the Issue Low (10) • Lack of Funding (9) • Lack of Collaboration (7) • Medicaid Eligibility/Benefits for > 21 (5) • Lack of CSHCN Program Staff (5) • Low Expectations for Youth (4) ICHP survey. 2001. Responses from 37 states; 104 total responses

47. Adult Providers Not Trained or Available • Insufficient number of adult providers who have needed skills/experience and are willing to care for adults with SHCN. • Lack of incentive ($) for adult physicians to work with "team" which is needed for complex illnesses intervention. • Adult primary care providers are not responsive - much less focused on total life issues than are pediatricians; adult providers are more focused on narrowly defined health issues. • Specialty medical care for adolescents and young adults with multiple disabilities is more fragmented and not as easily coordinated. There is more "teaming" with younger children. • Lack of an agency like the Title V CSHCN Program for adults

48. Health Risks of Transfer • Adult primary and specialty care providers may lack interest in and experience with “pediatric” disease in adult life • Inconsistency and discontinuity of care • Lack of familiarity with associated health risks (e.g. increased risk for cancer) • Loss of knowledge-base regarding the “natural course” of the individual’s condition • Reduction in amount, duration and scope of health care services and supports

49. Health Risks of Transfer • Expertise of youth and family in medical condition not recognized or used • Exacerbations not identified in a timely manner • Changes in therapeutic regimen lead to poor adherence • Specialty services geographically inaccessible

50. Factors that impede transition • Absence of referral networks • Lack of youth/family preparation for dealing with adult medical system • Linkage of insurance to employment • Differences in style and practice patterns of pediatric and adult medial systems