Title: Exploring the Transition of CYSHCN from Pediatric to Adult Care Epidemiological Challenges and Oppor
1Exploring the Transition of CYSHCN from Pediatric
to Adult Care Epidemiological Challenges and
OpportunitiesMaternal and Child Health
Epidemiology Conference December 11, 2003Tempe,
AZ
2Presenter
- 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
3Content
- Incidence and survival rates
- Social and cultural changes
- CSHCN National Goals
- Epidemiological Challenges Opportunities
4Childhood 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
5Incidence 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
6Incidence 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
7Incidence 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
-
-
8Social Cultural Changes
- Educational civil rights
- Societal expectations
- Organization, financing delivery of health care
for CSHCN
9Background
10(No Transcript)
11Social 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
12Conceptualizing the Population of Children with
Special Health Care Needs
13CSHCN 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.
14Care 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
15Six 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.
16Six 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
17National 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
18The 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
19Who 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
20Prevalence 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.
21Continuum of Chronic Conditions
22Adjusted 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.
23Goal 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
24Goal 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
25Goal 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
26Goal 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
27Goal 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
28Goal 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
29Goal 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
30Goal 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
31New 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
32Factors 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
35Life Expectancy - Cystic Fibrosis
Today, more than one-half of all persons with
cystic fibrosis are over the age of 21.
36Life ExpectancySickle Cell Disease
37Adults 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.
38Epidemiological Challenges
39Epidemiological 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?
40Transition to AdulthoodSpina Bifida
?
?
?
?
41Health Care Expenditures for Children
Children without Special Health Care Needs
Children with Special Health Care Needs
Expenditures
Population
42Health Care Expenditures Young Adults
?
Young Adults without Special Health Care Needs
?
Young Adults with Special Health Care Needs
Population
Expenditures
43Thrive 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?
44Developmental 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
45Factors Significantly Associated with Any Unmet
Need for Care Services Among CSHCN
46Barriers 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
47Adult 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
48Health 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
49Health 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
50Factors 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
51Culture of Childrens Hospitals Pediatric
Health Care
52Culture 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
53Culture of Adult Health Care
54Culture 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
55Culture of Adult Health Care
56Insurance 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
58Insurance 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
59Presence 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
60Why 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
61Strategies for Facilitating Health Care
Transitions
- Make transition a key measure of success
- Transfer knowledge into impact
62Opportunities
- 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.
63Opportunities
- 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?
64Previous 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
65http//hctransitions.ichp.edu