Health Care Reform and Children with Chronic Conditions

1. Health Care Reform and Children with Chronic Conditions James M. Perrin, M.D. Professor of Pediatrics, Harvard Medical School Director, Division of General Pediatrics MassGeneral Hospital for Children

2. Changing Patterns of Childhood Chronic Conditions

3. Children and Adolescents with Limitation of Activity

4. Disability from Childhood Chronic Health Conditions Per 1,000 population; NHIS, 2002-2003

5. Overall Growth in Childhood Chronic Conditions Cohorts of 2-8yo followed for six years; initial and end chronic condition prevalence; Van Cleave, Gortmaker, Perrin, JAMA, 2010; 303: 623-630

6. 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

7. 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

8. Overweight Asthma ADHD Depression Autism Spectrum Disorder 11,250,000* 5,250,000 4,000,000 3,200,000 500,000 New Epidemics: Mainly among school-age children and youth *population estimates, early-2000s

9. Cystic fibrosis Spina bifida Sickle cell anemia Hemophilia 22,500 60,000 37,500 7,500 “Other” Chronic Conditions

10. 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

11. Growth of Child and Adolescent Health Conditions, 1980-1995

12. Long-term Implications • Major (public) health burdens from • Rising cardiovascular disease (overweight and diabetes) • Increased pulmonary disability • Higher rates of mental health conditions • Decreased workforce participation and quality of life • Increased reliance on disability programs

13. 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

14. 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 rates • But certainly little improvement in 40 years!

15. Changes in Children’s Social Environment • Parenting • Media (incl., phones) • Physical activity and indoor time • Diet

16. Parental Stress • Changing employment patterns • Changing geography, esp. in urban areas • Children have less time and attention from consistent adults

17. Television and Media • 60% of all children with TVs in rooms; 30% of children <2 yo • Advertising for fast and high calorie foods • Children indoor and sedentary • Passive entertainment • Fast-paced, rapid cycling visual and auditory stimulation • Aggression and violence presented as harmless; gratification immediate • Tracks from preschool years to adolescence • Replaces tasks requiring more attention (e.g., reading; model building)

18. 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.)

19. Physical activity • Limited recreation (playgrounds, parks, sports programs) • Dangerous neighborhoods • Effects on social interactions • Decreased school physical education • Lower rates of walking and bicycling

20. More Time Indoors • More exposure to indoor pollutants • Less time socializing with peers • (More time with TV and other media) • (More sedentary behaviors)

21. Diet • Increased fast food and take out restaurants • Increased portion size • Nutrients from fortified drinks – sodas in schools • Clear association with overweight and diabetes • Association of asthma with • Low levels of omega-3 fatty acids and antioxidant vitamins • High levels of trans fatty acids • Sugar and ADHD (??)

22. Health Care Reform

23. 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

24. 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 models • Opportunities for blended payment models • Exchange plans and SCHIP

25. What Is a Medical Home? • An approach to providing health care services in a high-quality, comprehensive, and cost-effective manner • Provision of care through a primary care physician through partnership with other allied health care professionals and the family • Acts in best interest of children and youth to achieve maximum family potential • Many notions tested among children and youth with special health care needs – but principles and characteristics apply broadly to all children/families

26. Medical Home • Family-centered vs primary care • Characteristics • Patient registries, with severity assessment • Electronic medical records Practice standards and decision support • Development of clinical information to enhance guideline development • Care coordination • Clinical teamwork • Patient information and involvement in decisions

27. 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

28. Medical Home “Definition” in Legislation* • Personal physician • Whole person orientation • Coordinated and integrated care • Safe and high quality care • Evidence-informed medicine • Appropriate use of health information technology • Continuous quality improvement • Expanded access to care • Payment that recognizes added value of primary care components From the Medical Home Joint Principles

29. Joint Principles of the Patient-Centered Medical Home • American Academy of Pediatrics • American Academy of Family Physicians • American College of Physicians • American Osteopathic Association

30. Medical Home Joint Principles: Pediatric Preamble • Family centered care • Community based system of care • Transitions • Value

31. The Medical Home and Community Service System • Children and families receive services from many community sources • Education • Recreation • Transportation • Others • Medical home helps to coordinate key health-related services

32. Family-Centered Community-Based System of Services for Children and Youth Perrin, J. M. et al. Arch Pediatr Adolesc Med 2007;161:933-936.

33. 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

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

35. 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

36. 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

37. 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 care • Community-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

38. 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?

39. Opportunities • Universal health care coverage • Need to assure adequate benefit package • Emphasis on prevention of chronic conditions • Particularly relevant for children • Primary and secondary prevention • Improving coverage for subspecialty care?

40. Thank you!