The Medical Home on Steroids: Comprehensive Care for Children with Medical Complexity

1. The Medical Home on Steroids:Caring for Children with Medical Complexity Dennis Z. Kuo, MD, MHS Assistant Professor of Pediatrics, UAMS Denny Society 2011 Triennial Meeting September 23, 2011

2. Disclosures • Dennis Z. Kuo, MD, MHS has no financial relationships or commercial interests to disclose • No off-label use of medications or therapeutic devices will be discussed

3. Alex (name is changed) • Alex is a 3 month old child you have seen since birth. In the nursery, you noticed dysmorphicfacies, low tone, undescended testes, and a heart murmur. He developed heart failure shortly after and required surgery to repair a large VSD. • Today, you suspect craniosynostosis on exam. He is developmentally delayed and small for age. • What specialists does he need? • Therapists? • What is the role of the PCP?

4. Objectives • Define medical complexity • Define the ideal model of care • Discuss the role of the medical home (with or without steroids) for the child with medical complexity

5. History of the Medical Home • 1967: AAP – central source of records • 1978-9: efforts in NC and HI to meet health needs through community-based primary care • 1992: first AAP policy statement (update 2002) • 1994: Medical Home Training Program – MCHB • 1999: National Center • 2006: PCMH Joint Statement • 2009: ACA – multiple provisions (Health Homes, CMMI, etc) • Medical Home is rooted in community-based primary care, particularly for children with special health care needs Sia (2004)

6. Medical Complexity • Medically fragile, medically complex, etc • Usually described by: • Multiple subspecialists • Technology dependence for basic health needs • Frequent visits to tertiary care centers • High prevalence of neurodevelopmental disabilities and genetic disorders Srivastava 2005; Cohen 2011, Pediatrics

7. Why consider these children separately? Kuo et al (2011) Arch PediatrAdol Med, in press

8. Bending the cost curve • Medicaid projected growth rate: 8.8% • A small number of children are responsible for a majority of health care costs • Medicaid: 10% of children = 72% of costs • 0.4-1% of children = 12-15% of total costs, 20-25% of hospitalized patients, and 45-50% of hospital days • Most are children with medical complexity • Willie Sutton Shortell (2009), JAMA; Kenney (2009), Health Affairs; Neff (2004); Berry (2011) unpublished, by permission

9. Chronic Care Model: Addressing needs of children with medical complexity Antonelli R (2005). Adapted from Bodenheimer (2002)

10. The Medical Home Clinic • Comprehensive care assisting PCPs • Team-based care: physician, nurse, social work, nutrition, psychology, speech • Medical needs: nutrition, dysphagia, respiratory • Care coordination and oversight with specialty colleagues at ACH • Infants and children with at least 2 complex medical conditions that require care by at least two subspecialty clinics

11. Select Characteristics of 344 Children

12. Overall Costs: Adjusted vs Predicted and 95% Confidence Intervals • Pre-Post Analysis • Pre Medical Home average costs per child • per month = $4,678 • Post Medical Home average costs per child • per month = $3,427 • Pre – Post = -1,251, p < 0.001 Casey et al (2011) Arch PediatAdol Med

13. Downsides • Financially difficult to sustain • Gordon: deficit of $400K in 2005 • Services located at tertiary care centers • Capacity • MHCL enrollment: 450 • ~3700 children with medical complexity in Arkansas

14. Co-management:The medical home on steroids • Multiple health care professionals partner with families to provide a consistent direction of care • Integrates all components of care • Reinforces the active role of the PCP/Medical Home • Can we bring comprehensive care services to the community setting? Stille(2009)

15. Physician practices Kuo et al. ClinPediatr (2011)

16. Implementing co-management • Is the Medical Home communicating with other service providers? • Are the roles of all providers clear? • Are there clear protocols of care? • Is there patient and family engagement? • Are there strong community linkages? Taylor (2011), AHRQ

17. Roles • Medical Home: ALWAYS good primary care • First point of contact • Anticipatory guidance • Immunizations • Care hub / care coordination • Verify/Initiate Early Intervention • Act as “eyes and ears” for specialty teams • Remind families that you can be first point of contact

18. Additional roles • With good communication with specialty colleagues, may consider: • Labs • Medication initiation / adjustment • Referrals to community services • Consider designating office staff (such as nurse) to be single point of contact • Additional roles for office staff Kuo (2007) Pediatrics

19. Clear protocols of care • Common medical issues • Swallowing/feeding/growth; maximize pulmonary function; promote development/function • Engage specialty providers • Networking most important • “good neighbor” referrals • Define your communication lines

20. Patient and family engagement • “The ultimate measure of effectiveness of health care is how patients and families experience it” (Antonelli, 2009) • Educate families on roles • Family-centered care assessment tools • Families as partners on committees, QI teams, learning collaboratives

21. Community linkages • Know your resources • Get involved with statewide initiatives, AAP, etc • Develop relationships with local family-to-family health information center, other groups • Other folks to engage: care managers, social work, tertiary care centers

22. Ongoing projects • Learning collaboratives • Supported by HRSA D70 System of Care grant • Co-management protocols for complex neonates • Evaluate health care outcomes • Quality improvement • Implement practice changes • Carrot: get MOC Part 4 approval…hopefully

23. Conclusion • Children with medical complexity: high resource utilizers, multiple specialty needs, technology dependence • Comprehensive care and care coordination can reduce hospitalizations and overall costs • The Medical Home on steroids • Defined roles with colleagues • Care protocols • Patient and family engagement • Community linkages • Research continues • Health care reform???

24. Thank you!