1. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org Alex (name is changed) Alex is a 3 month old child you have seen since birth. In the nursery, you noticed dysmorphic facies, 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 a ge. What specialists does he need? Therapists? What is the role of the PCP?

4. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org Why consider these children separately? Complex/Chronic, % # school days missed last year, median [IQR]10 [5, 16-20] # doctor visits last year, median [IQR]11-15 [6, >21] # of ER visits, median [IQR]1 [0, 3] Received early intervention services, %82.2% Received special education services, %76.9% Kuo et al (2011) Arch Pediatr Adol Med, in press

8. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org Chronic Care Model: Addressing needs of children with medical complexity Antonelli R (2005). Adapted from Bodenheimer (2002)

10. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org Medical Condition*N Gastrostomy155 Preterm with BPD110 Seizure Disorders72 Cerebral Palsy60 Genetic Syndromes57 Congenital Heart Defects50 Age in Months at First Medical Home Program Visit (mean, SD)18(21) Male (%)60 *Medical condition categories not necessarily mutually exclusive. Select Characteristics of 344 Children Slide 11

12. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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 Overall Costs: Adjusted vs Predicted and 95% Confidence Intervals Casey et al (2011) Arch Pediat Adol Med

13. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org Physician practices N=203Always/Usually, % Offer written care plan15.4% Schedules extra time45.3% Satisfied with available time to care for CYSHCN32.6% Refer to community resources57.7% Keeps registry of CYSHCN patients5.4% Kuo et al. Clin Pediatr (2011)

16. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org 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. archildrens.org uams.edu arpediatrics.org archildrens.org uams.edu arpediatrics.org Thank you!