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The Medical Home on Steroids:Caring for Children with Medical Complexity

Dennis Z. Kuo, MD, MHSAssistant Professor of Pediatrics, UAMSDenny Society 2011 Triennial Meeting

September 23, 2011


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


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.

• What specialists does he need?• Therapists?• What is the role of the PCP?


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


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)


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


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


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


Chronic Care Model: Addressing needs of children with medical complexity

Antonelli R (2005). Adapted from Bodenheimer (2002)


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


Medical Condition* N

Gastrostomy 155

Preterm with BPD 110

Seizure Disorders 72

Cerebral Palsy 60

Genetic Syndromes 57

Congenital Heart Defects 50

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

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Ad-justed Costs

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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


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


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)


Physician practicesN=203 Always/Usually, %

Offer written care plan 15.4%

Schedules extra time 45.3%

Satisfied with available time to care for CYSHCN 32.6%Refer to community resources 57.7%Keeps registry of CYSHCN patients 5.4%

Kuo et al. Clin Pediatr (2011)


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


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


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


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


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


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


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


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???


Thank you!

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