The document discusses the challenges faced by children with medical complexity (CMC) and their impact on healthcare systems, highlighting that CMC represents a significant share of healthcare spending despite being a small population. It emphasizes the importance of coordinated care, citing specific examples of management and advocacy that benefit these children and their families. The complex care teams play a crucial role in reducing emergency visits and hospital admissions, ultimately improving the quality of life for CMC patients.

1. The Medically Complex Child:
It Takes a Village
Mary L. Ehlenbach, M.D.
Medical Director, UW Health-American Family Children’s Hospital Pediatric
Complex Care Program; Assistant Professor of Pediatrics, University of
Wisconsin School of Medicine and Public Health
David Hall, M.D.
Professor of Clinical Pediatrics, Vanderbilt University School of Medicine;
SecFon Head, Program for Children with Medically Complex Needs, Monroe
Carell Jr Children’s Hospital
Ingrid A. Larson, MBA, DNP, NEA-BC, APRN
Director, Beacon Program, Children’s Mercy Kansas City

3. Defining the popula=on: Children with
Medical Complexity (CMC)
NaFonal Survey of Children with Special Health Care Needs. NS-CSHCN 2016. Data query from the Child and Adolescent Health Measurement IniFaFve, Data Resource Center for
Child and Adolescent Health website. Retrieved 9/6/17 from www.childhealthdata.org.
81%
19%
Healthy
Children
CSHCN

4. CMC are a Subset of Children with Special
Healthcare Needs
Severe Chronic
CondiAons
FuncAonal
LimitaAons
SubstanAal Service
Needs
High Health
Care Use
Cohen, et al. Children With Medical Complexity: An Emerging PopulaFon for Clinical and Research
IniFaFves. Pediatrics. 2011:127:529.

6. Impact of CMC on Children’s Hospitals in US
-5
0
5
10
15
20
25
30
35
40
2004 2005 2006 2007 2008 2009 2010 2011 2012 2013
% Growth in Reference to 2004
Year
Growth in Number of PaAents
(Less ConservaAve)
Non_Chronic
Non_Complex
Complex
p<0.0001
Source: Children’s Hospital AssociaFon

7. Small but Mighty - Impact on Cost is Dispropor=onate
<1% of all children
~33% of healthcare
spending on children
Cohen E, et al. Paaerns and costs of health care use of children with medical complexity. Pediatrics. 2012.
Neff JM, et al. IdenFfying and classifying children with chronic condiFons using administraFve data with the clinical risk group classificaFon system. Ambulatory Pediatrics. 2002.
CMC
nonCMC

8. 55% of all inpaFent costs in
children’s hospitals
85% of all 30-day readmission
costs in children’s hospitals
Berry, J. G. (02/2013). JAMA pediatrics: InpaFent growth and resource use in 28 children's hospitals A longitudinal, mulF-insFtuFonal study American Medical AssociaFon.
Berry et al. Health Affairs (2014)
CMC
nonCMC
Cost Impact on Children’s Hospitals

9. Child Health Spending and CMC
Non-CMC
66% Hospital use
Home nursing
OutpaFent
Pharmacy
ED
CMC
33%
Slide courtesy of Ryan Coller, MD MPH.
Cohen E, et al. Paaerns and Costs of health care use of children with medical complexity. Pediatrics. 2012
Neff J, et al. Profile of medical charges for children by health status group and severity level in a Washington State Health Plan. Health Services Research. 2004
$650 billion
annually
85% of all
costs are
just for
medicaAons,
specialty care,
and hospital
care.

11. Liam’s Story

12. Medical Issues at Enrollment
Lennox-Gastaut Seizures
Cerebral palsy
Diabetes insipidus
Chronic lung disease
AspiraFon pneumonia
Profound intellectual disability
Cardiac arrhythmia
G-tube feeding dependence
Sleep apnea
Autonomic dysfuncFon
CorFcal visual impairment
Kidney stones

13. Medical Management AND Care Coordina=on
• Took over prescrip=on drug management
• Created crisis plans – and ensured they were implemented!
• ED visits
• Hospitaliza=ons
• Made his EMR a useful tool
• Priori=zed (at =mes eliminated) specialty visits
• Advocated for labs to be performed by peds phlebotomists at the children’s
hospital instead of local clinic
• Facilitated mul=ple follow-up appointments on the same day
• Wrote a grant for rent assistance so family could buy an accessible vehicle

14. “In the span of 21 months, I have
received over 300 responses to my
inquiries in MyChart…This speaks to the
level of health issues that my son
chronically faces but [also] to the level
of care and management that Jess [RN]
extends to my son.”

15. “The Complex Care team funcFons…as the ‘CEO’ of
[Liam’s] health…Every health issue that Liam has is
cloaked under the Complex Care team…”
“If…Complex Care did not exist…
• Liam would have more ER visits that would lead
to more admissions.
• Liam would spend less Ame in school…
• I would spend more Ame contacAng mulFple
subspecialists…trying to arrange doctors’
appointments, x-rays, and lab draws.”
In the words of Liam’s mom…

16. Contact Informa=on
• Mary Ehlenbach
• Pediatric Complex Care Program: UW Health-American Family Children’s
Hospital
• mehlenbach@pediatrics.wisc.edu
• David Hall
• Program for Children with Medically Complex Needs: Monroe Carell Jr
Children’s Hospital
• david.e.hall@vanderbilt.edu
• Ingrid Larson
• Beacon Program: Children’s Mercy Hospital Kansas City
• ialarson@cmh.edu