1. Partnering with Patients and Families in the Medical Home 2011 CME Webinar Series brought to you by the National Center for Medical Home Implementation The Role of the Medical Home in Care of Children with Complex Chronic Conditions Dennis Z. Kuo, MD, MHS, FAAP UAMS / Arkansas Children’s Hospital Jane Sneed, MD, FAAP The Children’s Clinic, Jonesboro, AR June 2, 2011

2. Disclosures Neither Dr. Kuo or Dr. Sneed have any relevant financial relationships with the manufacturers(s) of any commercial products(s) and/or provider of commercial services discussed in this CME activity. We do not intend to discuss an unapproved/investigative use of a commercial product/device in our presentation.

3. Looking Back… The first and second webinars of this series: History of medical home model Health care teams, family/professional partnerships, Bright Futures, quality improvement Care management of chronic condition (asthma)

4. Webinar Objectives By the end of this webinar, the participant will be able to: Illustrate the importance of building and maintaining multi- specialty teams in the provision of care for children and youth with complex chronic conditions Explore strategies for enhancing complex co-management working partnerships between specialty and primary care clinicians Explain how to effectively work with clinical teams and patients/families for successful and appropriate care transition planning from pediatric to adult care

5. 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 age.

6. Alex’s needs What specialists does he need?  Cardiology, neurosurgery, urology, GI, genetics  when older: ENT, developmental, neurology What therapists does he need?  Speech, swallowing, OT, PT, developmental What is the role of his primary care provider?  Checkups? Nutrition? Care coordination? Immunizations? What is the role of his family?  Should this have gone at the top of the list?

7. Complex Chronic Conditions “Medically fragile” or “Medical Complexity” 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

8. Why consider these children separately? Highest risk for adverse outcomes  Medical, growth, developmental, social  Tend to “fall through the cracks” Most challenging Most satisfying?  The role of the Medical Home (on steroids?)

9. Bending the cost curve Medicaid projected growth rate: 8.8% - higher than Medicare or national health spending  Bend the curve: slowing the rate of increase 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 Shortell (2009), JAMA; Kenney (2009), Health Affairs; Neff (2004); Berry (2011) unpublished, by permission

10. The high resource utilizers The vast majority of the high resource utilizers have “complex” and “chronic” conditions  Children who “fall through the cracks”  Majority of costs are inpatient Need to coordinate care and improve quality  Integrated, organized systems  Fundamental payment reform Neff (2004); Fisher (2009) NEJM; Berry (2011), J Peds; Cohen (2011)

11. Building and maintaining multi-specialty teams for children with complex chronic conditions Consider:  The components of care  How the components work together  The role of the Medical Home  How the Medical Home can initiate and lead co-management

12. Care components Perrin et al. (2007) Arch Pediatr Adoles Med

13. The world that Alex’s parents see Ray (1997, 2002)

14. The Chronic Care Model From Wagner EH. Figure from Antonelli R (2005). Adapted from Bodenheimer (2002)

15. Chronic Care Model components Care partnership support Delivery system design Decision support Clinical information systems

16. When comprehensive care works 48% decrease in the number of hospital days and a $10.7 million decrease in payments to the tertiary care center Gordon JB Pediatr Adol Med 2007 55% reduction in ED visits Klitzner TS J pediatr 2010 40% reduction in inpatient costs, 27% decrease in hospital stays Casey PH Arch Pediatr Adolesc Med 2011 Courtesy of D. Bergman

17. Putting it all together: Co-management Multiple health care professionals partner with families to provide a consistent direction of care For children with complex chronic conditions:  Integrates all components of care  Reinforces the active role of the PCP/Medical Home Stille (2009)

18. Partners Specialty care = straightforward  Does not address all needs Primary care = first point of access, immunizations, continuity  Primary care sometimes not fulfilled when child has multiple visits to specialty services  Assumption that needs are being met Community-based services  Not always consistent Families! Haggerty (2011). Academic Pediatrics

19. Primary care “Medical Home” as hub of coordination partnership PCPFamily Specialist Medical Home “functions”: explainer, interpreter, advisor, coordinator PCP= the child’s Primary Care PRACTICE (not just one provider) Slide courtesy of Chris Stille, MD

20. Spectrum of co-management PCP as primary manager, specialist as consultant  Less complex, few specialty needs Specialist as primary manager, PCP less involved  Appropriate for high complexity and if comprehensive service exists at tertiary care center Co-management  Medical Home has higher responsibility  Medical Home acts as care coordinator  Some children with complex chronic conditions have no subspecialty “home” Hack, Pediatric Annals 1997; Antonelli, 2005; adopted from C. Stille (2009)

21. Making co-management work Define your roles  Primary care physician has higher responsibility  Specialty provider provides decision making support Primary care physician can learn to care for higher complexity over time Most PCPs welcome co-management Don’t forget families! Antonelli (2005); Kuo (2007); Kisker (1997)

22. Take the initiative Recognize the components of comprehensive care that only PCP can deliver PCP determines the additional level of involvement, due to varying experience  PCP can provide improved access, continuity, and care coordination for children and families  Higher level of co-management likely improves care outcomes due to improved access Initiate communication with specialty colleagues  Determine your roles and be specific for what you need Comfort will increase over time

23. Care partnership: Family-Centered Care Essential, yet frequently misunderstood  Associated with more efficient use of health care resources for CYSHCN Principles:  Partnership approach to care  Respect for diversity  Information sharing is open and unbiased  Care plans may be negotiated Kuo (2011) MCHJ; Kuhlthau (2011) Acad Pediatr

24. Delivery System Design: Define 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

25. 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 Help families define their roles  Foster children/families likely require extra attention Kuo (2007). Pediatrics

26. Decision making support Clinical care guidelines (e.g. AAP) Be familiar with common issues of condition(s)  High prevalence of neurodevelopmental disabilities  Recognize that many children have feeding/growth issues, dysphagia, respiratory issues Learn from specialty colleagues  Regular communication; they will teach you  Eyes and ears / red flags

27. Define communication lines Keep updated and continuous care plan  Consider separate forms and someone to maintain Methods of communication  Email? Fax? Phone call?  What will be communicated? – ask specialists  Timing and frequency of communication  Health care portals If all else fails, encourage family to contact you and / or schedule regular follow-up visits

28. Clinical Information Systems Track your children with special needs  Particularly children with complex chronic conditions  Quality of care measures Utilize communication lines, including email, fax, phone Clinical decision making tools

29. Conclusions Comprehensive care can improve health outcomes and reduce utilization Medical Home must take the lead to develop comprehensive care for children with complex and chronic health conditions Co-management increases PCP involvement and can lead to improved outcomes

30. Thank you! Questions?

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