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Exploring the Transition of CYSHCN from Pediatric to Adult Care Epidemiological Challenges and Oppor

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Downs syndrome 1.2. Without CHD (79% to 30 years) With CHD (50% to age 30) ... 'A child born with Downs Syndrome in 1949 had a 9 year life expectancy, today the ... – PowerPoint PPT presentation

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Title: Exploring the Transition of CYSHCN from Pediatric to Adult Care Epidemiological Challenges and Oppor


1
Exploring the Transition of CYSHCN from Pediatric
to Adult Care Epidemiological 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_at_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 1 1.7 (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
10
(No Transcript)
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
    childs 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,
19681997, 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 Cardiol 41
    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 individuals 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

51
Culture of Childrens Hospitals Pediatric
Health Care
52
Culture of Childrens Hospitals Pediatric
Health Care
  • Established multidisciplinary model
  • High level of psychosocial support from nurses
    and other staff
  • Developmentally oriented (school life progress)
  • Family-focused
  • Maternal/paternal non-judgmental flexible
  • Warm, optimistic and interpersonally oriented
  • Informal and relaxed
  • Involves parental direction and consent

53
Culture of Adult Health Care
54
Culture of Adult Health Care
  • Emerging multidisciplinary model
  • Minimal psychosocial involvement of nurses
    staff
  • Business-like, formal and judgmental
  • Patient-focused
  • Strong focus on disease process
  • Focus on diet, exercise, compliance
  • Procedure and lab-based
  • Requires patient to be autonomous and to
    function independently

55
Culture of Adult Health Care
56
Insurance Status
  • Medicaid financial eligibility changes at age 18.
  • Medicaid EPSDT mandates end at age 21 reduction
    in amount, duration and scope of services
  • SCHIP eligibility ends on 19th birthday.
  • Title V CSHCN Program eligibility ends (usually)
    at 21
  • Employment-based family coverage of dependents
    typically ends by age 23.
  • SSI beneficiaries are eligible for Medicaid but
    SSI criteria more restrictive for adults
    (starting at age 18).
  • Health insurance not a benefit for lower wage and
    entry level positions.
  • Private insurance may limit amount, duration and
    scope of services

57
Uninsured Children Adolescents - 2002
Source US Census Bureau 2003
58
Insurance Status
  • Preliminary study results
  • Young adults with disabilities age 18-24 N1401
  • 1994-1995 Phase II NHIS Disability Supplement
  • 26 not covered by any insurance program.
  • 73.7 covered by some form of public or private
    insurance
  • 44 were covered by private insurance only
  • 26.5 by public insurance only
  • 3.3 by both private and public insurance.
  • Those covered by insurance were more likely to
    identify
  • a regular clinician (p
  • a usual general/family physician and a
    specialist (p
  • a doctor as their overall medical care
    coordinator (p
  • Source Access to healthcare for young adults
    with disabilities in transition Cyril JK,
    Thierry J Ryerson B. (CDC) Presentation at APHA
    2003 Annual Conference

59
Presence and Characteristics of Usual Source of
Care for Young Adults with Disabilities, 1994-1995
Source Access to healthcare for young adults
with disabilities in transition Cyril JK,
Thierry J Ryerson B. (CDC) Presentation at APHA
2003 Annual Conference
60
Why is Implementing Health Care Transition So
Hard?
  • Health care system issues
  • Health care insurance financing issues
  • Family/patient preferences
  • Physician knowledge, experience, values
  • Hospital/ provider organization issues
  • Lack of data on importance of issue
  • Lack of models, evidence mandate

61
Strategies for Facilitating Health Care
Transitions
  • Make transition a key measure of success
  • Transfer knowledge into impact

62
Opportunities
  • Cross-sectional and longitudinal studies of youth
    and young adults with childhood onset chronic
    health conditions and disabilities (pop.
    condition specific) (age 18 26)
  • Studies of quality outcomes of care provided by
    pediatric and adult health care professionals
    facilities to individuals with childhood onset
    chronic health conditions and disabilities
    (impact - accreditation certification as a
    Medicaid Medicare provider)
  • Studies of health care transition programs.

63
Opportunities
  • Racial and ethnic disparities?
  • Incidence of adverse events avoidable
    exacerbations of the chronic condition?
  • Incidence of secondary conditions?
  • Change in residence (urban, rural, frontier)
    living arrangements (with parent, congregate,
    independent)?
  • Educational achievement employment?
  • Access to preventive, primary and specialty care?
  • Reproductive health care?

64
Previous Initiatives
  • Surgeon Generals Conference
  • Growing up and getting Medical Care Youth with
    SHCN (1989)
  • http//hctransitions.ichp.edu/sgconference.html
  • National Center for Youth with Disabilities
    University of Minnesota (Blum) (1990-98)
  • MCHB Activities Healthy and Ready to Work
  • http//www.mchbhrtw.org/ http//www.hrtw.org
  • AAP Policy Statements Publications
  • http//aappolicy.aappublications.org/
  • Supplement to Pediatrics, December 2002

65
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