PROJECT NAME: A Comprehensive Medical Home
for Children with Medical Complexity
Institution: Seton Healthcare Family
Primary Author: Toni Wakefield, MD
Secondary Author: Mark W Shen, MD, Rahel Berhane MD, Kendall
Sharp RN, PNP, Valerie MacLaurin, RN PNP, Maria Rodriguez, LMSW,
Anne Claire Hickman, CCLS, Christine Jesser, ScD, Ryan Leslie, PhD
Project Category: Patient-centered care and Efficiency
Overview:
Children with medical complexity represent the most complicated patients in our
healthcare system. While they account for a minority (<2-3%) of the pediatric
population, they are responsible for a disproportionate share (>40%) of the
healthcare system’s costs. Similarly, numerous challenges with respect to care
coordination and family-centeredness often arise in proportion to the overall
complexity of the child and social situation. Research has shown that caring for
these children in medical homes and using interdisciplinary approaches offer
quality patient care (Page, 2004; Rosenstein & O’Daniel, 2005), better outcomes
(Homer et al, 2008), and decreased costs (National Joint Practice Commission,
1981 and Schmalenberg et al, 2005).
The Seton Health Comprehensive Care Clinic (CCC) pilot was started in late 2011
under the support of Seton Family of Hospitals/Dell Children’s Medical Center and
‘Specially for Children (SFC - a large multispecialty pediatric group). The CCC is
an interdisciplinary outpatient clinic that focuses on providing a family-centered
medical home that combines holistic comprehensive medical, behavioral care, care
coordination, and specialist integration. It is staffed by three pediatricians (2.0
FTE), 2 APNs, an RN Case Manager, a LMSW, a Certified Child Life Specialist
(CCLS), and an MA, as well as an Operations Manager and a Family Advisory
Panel. The clinic partners with SFC subspecialists and DCMC hospitalists both in
the design of clinical protocols and in co-management of patients.
In alignment with organizational goals, national trends towards healthcare reform
and organizational interest in creation of ACO’s, this clinic seeks to learn about
factors that contribute to improved efficiency and quality of care in the most
complex, fragile children. This project was built upon a foundation of quality
improvement but also designed as a randomized, controlled trial in order to further
inform future decision-making for this population.
Aim Statement (max points 150):
Our primary aim is to reduce total costs within the Seton Healthcare system for
enrolled children with medical complexity by 50%, as compared to both historical
and randomized controls, within 18 months. This will be accomplished primarily
through decreasing hospitalizations, Emergency Department and specialist visits
by 50 % in the first twelve months of patient enrollment in the clinic.
Measures of Success:
Hospitalizations, ED visits and subspecialist visits are pulled from administrative
databases. Financial data (costs and charges) will also be obtained from
administrative databases. We will compare clinic patients’ data to a randomized
control group of “usual” care patients.
Twelve months of pre-enrollment data and post-enrollment, as accrued, were
examined for clinic and control patients. Study enrollment is occuring on a rolling
basis, therefore the control charts reflect data for each month of enrollment.
Therefore, “month zero” represents the first 30 days of patient enrollment. This
should remove seasonal variability from the charts as “month zero”s will be
distributed evenly through peak winter/spring respiratory/flu seasons through
milder summer and fall seasons.
Use of Quality Tools (max points 250):
Key driver diagrams were used to map out processes and interventions likely to
reduce utilization (figure 1).
Figure 1
Interventions (max points 150 includes points for innovation):
This clinic was supported through a network-wide initiative of the Seton Healthcare
Family, with alignment of goals at the highest level of the organization. Notably,
cost reduction for the healthcare system remained a primary goal despite the likely
loss of revenue for the sponsoring organization. Significant freedom was allowed
in both the design and structure of the clinic for the experienced, frontline expert
leaders of the clinic – two parents of children with medical complexity. The project
leader is a parent that has led Central Texas focus groups for parents and the
medical director is a parent-physician (pediatric subspecialist). Similarly, the core
structural backbone of the clinic is a high-functioning, interprofessional team.
Major themes in our improvement plan include building processes for effective
Care Coordination, reducing variation by creating standardized approaches to
common medical issues, and placing the needs and perspective of the patient and
family at the center of the medical plan.
 Care coordination in this population involves an appreciation for the
dynamic nature of complex diseases, the intense communication needs for
effective therapeutic relationships and the existing fragmentation of care in
our system. Innovations include:
o 24/7 availability with use of family-centered communication
techniques (email, texting, cell phone, etc.)
o Team huddles to brief/debrief to keep the multidisciplinary team
appraised of patient developments within the clinic
o Proactive tracking of procedures, tests, appointments on a shared
clinic calendar to create a shared awareness of ongoing events
o Dynamically updated Care Plan documents for each patient
o Efficient and collaborative communication with specialists, therapists
and nursing agencies (e.g. care tele-conferences) to streamline care
 Reducing variation: Team members and specialists reviewed current
literature to develop standardized guidelines for management of common
problems in this population:
o Seizures
o Behavioral issues
o Optimal Nutrition
o Feeding Intolerance
o Aspiration prevention
o Sleep disturbances
o Respiratory health
o Elimination
o Musculoskeletal function
o Pain control
Evidence-based positions were adopted when available, otherwise
guidelines reflect a consensus based approach. Structured data fields
were built in the HPI section of the EMR and periodic data and chart
reviews ensure that major domains are being addressed at every patient
intake. Primary clinicians also agreed on utilizing consistent ICD codes
so that we can proactively track how patients with certain conditions are
doing: the goal is to utilize outcome data from the EMR to modify and
optimize our standardized guidelines.
 Family-centered care: Eliciting and addressing key family concerns is
placed at the center of clinic interactions and incorporated into our EMR.
The clinic utilizes an extensive intake process to build relationships that will
empower the families to participate and collaborate in their child’s health.
Dedicated case management, social and child life specialists work to
address the needs of the family as a whole, navigating the medical system,
linking patients to community resources and providing supportive and
therapeutic support for all family members.
Results (max points 250):
Preliminary data for the first four months of clinic show a favorable trend in our
measures, based on 44 clinic and 51 control patients enrolled to date: For clinic
patients, the average number of hospitalizations per patient per month of
enrollment has decreased by 64% (Figure 2), whereas the Control group had a
10% decrease. This difference between clinic and control patients is also
demonstrated in the control chart that demonstrates the difference in hospital admit
rate between the two groups(Figure 3).
Pre/Post Monthly Admit Rate Comparison
Per Patient Monthly Admit Visit Rate
0.12
0.10
0.08
0.06
0.04
0.02
0.00
Pre Admits
Post Admits
Intervention
0.11
0.04
Control
0.10
0.09
Figure 2
Desired
direction of
change
Figure 3
For clinic patients, the average number of Emergency Department visits per patient
per month of enrollment has decreased by 33% (Figure 4), whereas the Control
group had a 33% increase. This difference between clinic and control patients is
also demonstrated in the control chart that demonstrates the difference in ED visit
rate between the clinic and control patients. (Figure 5).
Pre/Post Monthly ED Rate Comparison
Per Patient Monthly ED Visit Rate
0.14
0.12
0.10
0.08
0.06
0.04
0.02
0.00
Pre ED
Post ED
Intervention
0.13
0.09
Control
0.09
0.12
Figure 4
Desired
direction of
change
Figure 5
Revenue Enhancement /Cost Avoidance / Generalizability (max
points 200):
Preliminary results show a positive trend towards successful reduction in costs for
the most fragile (and most expensive) pediatric patients. However, outliers in the
data (i.e., extremely expensive hospitalizations), currently skew the results and
more time will be needed to allow for greater enrollment and appropriate power
calculations. The data from the next several months should clarify whether initial
positive trends are due to baseline regressions toward the mean or have come
from the multifaceted improvement efforts of the clinic. Administrative data shown
above lag behind real-time performance, but recent clinic data suggest we remain
on target to reduce hospitalizations and ED visits by half and achieve our AIM of
cost reduction by 50%.
Eventually, cost data from this clinic will serve as an ideal basis for novel contracts
with health care purchasers as part of the pioneer ACO initiative of the larger
institution. Fundamentally, the clinic hopes to define a model where the merit of
any intervention is measured for its value and continuous quality improvement
processes are incorporated into the culture of the care delivery paradigm.
Conclusions and Next Steps:
Future work will define events that lead to preventable ER visits and
hospitalizations. Given the rarity of these events and the fragility of the population
(e.g. one unfilled prescription or lapse in communication may lead to an
unintended ED visit and admission), clinic staff have developed a heightened
situational awareness of traditionally less “urgent” outpatient events. This
represents a paradigm shift such that prevention of lapses in family-centered
comprehensive care coordination may be more important than a well-defined
medical “interventions.” Thus, a framework of high reliability, which aligns perfectly
with a larger transformational Seton initiative, will be infused into the operations of
the clinic and staff. Also, the extensive work in creating structured data fields in the
EMR have created a robust framework for data collection, outcome evaluation and
therefore evidence generation and scientific discovery. Aspirational aims include
changing the future of complex care within Central Texas, incorporating local
pediatric practices to disseminate the model and spread the process of continual
improvement – especially as it relates to longitudinal care of complex medical
conditions.