Health Care Reform and Children with Chronic Conditions

James M. Perrin, M.D.Professor of Pediatrics, Harvard Medical School

Director, Division of General PediatricsMassGeneral Hospital for Children

Changing Patterns of Childhood Chronic Conditions

Children and Adolescents with Limitation of Activity

012345678

Per

cent

1960 1969-70 1974-75 1979-81 1992-94 1996-98

Newacheck, NHIS Analyses

Disability from Childhood Chronic Health Conditions

0

5

10

15

20

25

30

35

Speech problems

Asthma

Dvlptl Retardation

Other Mental Condition

ADHDLearning Disability

<5 yo5-11 yo12-17 yo

Per 1,000 population; NHIS, 2002-2003

Overall Growth in Childhood Chronic Conditions

0

5

10

15

20

25

30

1988-1994 1994-2000 2000-2006

Initial Prev

End Prev

Cohorts of 2-8yo followed for six years; initial and end chronic condition prevalence; Van Cleave, Gortmaker, Perrin, JAMA, 2010; 303: 623-630

Trajectories of Chronic Conditions

Children in the National Longitudinal Survey of Youth (NLSY)

1988, 1994, 2000, and 2006 comparisons

40-50% of children with chronic conditions in 1988 do not have them in 1994 (same in 2000 and 2006)

>60% of those with chronic conditions in 1994 (or 2000 or 2006) did not have them six years earlier

Chronic Conditions: Children and Adults

Adult conditions: small number of common conditions

Child conditions: large number of (mainly) rare conditions

Most conditions more common in males, especially before puberty

Most children survive, although developmental, physical, and psychological outcomes vary

New Epidemics: Mainly among school-age children

and youthOverweight

Asthma

ADHD

Depression

Autism Spectrum Disorder

11,250,000*

5,250,000

4,000,000

3,200,000

500,000

*population estimates, early-2000s

“Other” Chronic Conditions

Cystic fibrosis

Spina bifida

Sickle cell anemia

Hemophilia

22,500

60,000

37,500

7,500

Growth in Rates of Chronic Conditions

1960-1980: Improvements in survival led to increases in rate of a number of chronic conditions (>80% survival in 1980; >95% survival currently)Marginal impact of newer conditions (eg, VLBW, in utero toxins, AIDS)1980-2006: New epidemics of common chronic conditions

Growth of Child and Adolescent Health Conditions, 1980-1995

0%

2%

4%

6%

8%

10%

12%

14%

16%

Obese(>95%ile)

ExtremeObesity

(>99%ile)

Asthma ADHD

early 1980smid 1990s

Long-term Implications

Major (public) health burdens fromRising cardiovascular disease (overweight and

diabetes) Increased pulmonary disabilityHigher rates of mental health conditions

Decreased workforce participation and quality of lifeIncreased reliance on disability programs

Childhood Chronic ConditionsIncreasing Prevalence

Several developments have led to dramatic increases in childhood chronic conditions: Amazing biomedical advances

Children with chronic conditions live longer (eg, CF, leukemia) More children survive (eg, NICU, surgical)

Genetics (?) Toxins – known and unknown Autoimmune conditions on the rise Regressive social changes

Factors affecting New Epidemics

Increasing rates of VLBW

Poverty Increases rates of most conditions Increases severity of many conditions

Little evidence for changes in poverty ratesBut certainly little improvement in 40 years!

Changes in Children’s Social Environment

Parenting

Media (incl., phones)

Physical activity and indoor time

Diet

Parental Stress

Changing employment patterns

Changing geography, esp. in urban areas

Children have less time and attention from consistent adults

Television and Media

60% of all children with TVs in rooms; 30% of children <2 yo Advertising for fast and high calorie foodsChildren indoor and sedentaryPassive entertainmentFast-paced, rapid cycling visual and auditory stimulationAggression and violence presented as harmless; gratification immediateTracks from preschool years to adolescenceReplaces tasks requiring more attention (e.g., reading; model building)

Impact of Television

Fattening children in front of TV (Gortmaker, Dietz)

Dose-related effects of TV on initiation of smoking among 10-14 year olds (Gidwani et al.)

Physical activity

Limited recreation (playgrounds, parks, sports programs)

Dangerous neighborhoodsEffects on social interactions

Decreased school physical education

Lower rates of walking and bicycling

More Time Indoors

More exposure to indoor pollutants

Less time socializing with peers

(More time with TV and other media)

(More sedentary behaviors)

Diet

Increased fast food and take out restaurantsIncreased portion sizeNutrients from fortified drinks – sodas in schools

Clear association with overweight and diabetesAssociation of asthma with Low levels of omega-3 fatty acids and antioxidant vitamins High levels of trans fatty acids

Sugar and ADHD (??)

Health Care Reform

Health Care Reform Benefits for Children

Improved Medicaid reimbursement To Medicare floor for primary care by 2013 Potential limitations!

States to maintain Medicaid eligibility levels thru end of 2014; CHIP thru Sept 2019

Required coverage of pre-existing conditions

Use of Bright Futures in well child and preventive care – with no copays

Medicaid, SCHIP, and Health Care Reform

Broad payment reform experiments Substantial emphasis on primary care medical

home

Center for Medicare and Medicaid Innovation – encouraging new patient care modelsOpportunities for blended payment models

Exchange plans and SCHIP

What Is a Medical Home?What Is a Medical Home? An approach to providing health care services in a An approach to providing health care services in a high-quality, comprehensive, and cost-effective high-quality, comprehensive, and cost-effective mannermanner

Provision of care through a primary care physician Provision of care through a primary care physician through partnership with other allied health care through partnership with other allied health care professionals and the familyprofessionals and the family

Acts in best interest of children and youth to Acts in best interest of children and youth to achieve maximum family potentialachieve maximum family potential

Many notions tested among children and youth Many notions tested among children and youth with special health care needs – but principles and with special health care needs – but principles and characteristics apply broadly to all characteristics apply broadly to all children/familieschildren/families

Medical HomeFamily-centered vs primary care

Characteristics Patient registries, with severity assessment Electronic medical records Practice standards and

decision supportDevelopment of clinical information to enhance

guideline development Care coordination Clinical teamwork Patient information and involvement in decisions

Medical Home: Does it Work?

33 articles from 30 distinct studies 6 RCTs 1 pre-post with comparison; 4 without 3 cohort 16 cross-sectional

Evidence for improved Health status Timeliness of care Family-centeredness Family functioning

Homer et al., Pediatrics, October 2008

Medical Home “Definition” in Legislation*

Personal physicianWhole person orientationCoordinated and integrated careSafe and high quality care Evidence-informed medicine Appropriate use of health information technology Continuous quality improvement

Expanded access to carePayment that recognizes added value of primary care components

From the Medical Home Joint Principles

Joint Principles of the Joint Principles of the Patient-Centered Medical Patient-Centered Medical

HomeHomeAmerican Academy of PediatricsAmerican Academy of Pediatrics

American Academy of Family PhysiciansAmerican Academy of Family Physicians

American College of PhysiciansAmerican College of Physicians

American Osteopathic AssociationAmerican Osteopathic Association

Medical Home Joint Medical Home Joint Principles: Pediatric Principles: Pediatric

PreamblePreamble

Family centered careFamily centered care

Community based system of careCommunity based system of care

TransitionsTransitions

ValueValue

The Medical Home and The Medical Home and Community Service SystemCommunity Service System

Children and families receive services from Children and families receive services from many community sourcesmany community sources EducationEducation RecreationRecreation TransportationTransportation OthersOthers

Medical home helps to coordinate key health-Medical home helps to coordinate key health-related servicesrelated services

Perrin, J. M. et al. Arch Pediatr Adolesc Med 2007;161:933-936.

Family-Centered Community-Based System of Services Family-Centered Community-Based System of Services for Children and Youthfor Children and Youth

Additional coverage and insurance reforms

No lifetime or unreasonable annual benefit limits

Prohibits discriminatory premium rates

Guaranteed availability of coverage

Prohibits pre-existing condition exclusions

Includes dependent coverage up to age 26 years

Increased access to home/community-based services in Medicaid

Community health

Major expansion (double #s of patients seen in three years) of community health centersMedical home extension service – state hubs with community-based services to aid in transformation Support for transformation to primary care medical homesIncreased scholarships and loan forgiveness to PCPs in Natl Health Service Corps sites

Quality

Section 2717 recognizes medical home as way to improve health outcomes

Exchange payment structures have incentives to improve health outcomes, including use of medical home

Specific Medical Home efforts

$25 million in state planning grants to develop amendments to provide “health homes”

Substantial (90%) Federal match for health homes development

Pediatric accountable care organization demonstrations (within 3 years)

Various experiments

Medical Home Experiments

Broad payment and practice reform in primary care, including PCMH models, “for high-need applicable individuals, women’s unique health care needs, and models that transition PCPs from FFS to capitated payments or salaried careCommunity-based teams (esp., in smaller communities) to enhance patient self-management Collaborate with local PCPs to coordinate disease prevention , chronic

disease management, transitions among health providers, and case management (including children), with priority given to conditions amenable to prevention, chronic conditions, or conditions identified by the Secretary

Center for Medicare and Medicaid Innovation – encouraging new patient care models Opportunities for blended payment models

Summary

Medical home prominent in health care reform legislation – in large part related to patients with chronic health conditions

Much focused on primary care for adults

Opportunities to improve primary care-subspecialty care referral and collaboration

How does HCR affect children with chronic conditions?

Opportunities

Universal health care coverageNeed to assure adequate benefit package

Emphasis on prevention of chronic conditionsParticularly relevant for childrenPrimary and secondary prevention

Improving coverage for subspecialty care?

Thank you!