The Joint Commission Journal on Quality and Patient Safety 2017; 43:101–112

Applying the Chronic Care Model to Improve Care and

Outcomes at a Pediatric Medical Center
Jennifer Lail, MD, FAAP; Pamela J. Schoettker, MS; Denise L. White, PhD, MBA; Bhavna Mehta, MBA (MIS);
Uma R. Kotagal, MBBS, MSc

Background: Cincinnati Children’s Hospital Medical Center launched the Condition Outcomes Improvement Initia-
tive in 2012 to help disease-based teams use the principles of improvement science to implement components of the Chronic
Care Model and improve outpatient care delivery for populations of children with chronic and complex conditions. The
goal was to improve outcomes by 20% from baseline.
Methods: Initiative activities included review of the evidence to choose and measure outcomes, development of condition-
specific patient registries and tools for data collection, patient stratification, planning and coordinating care before and after
visits, and self-management support.
Results: Eighteen condition teams, in sequenced cohorts, fully participated in the three-year initiative. As of October 1,
2015, data from 27,221 active patients with chronic conditions were entered into registries within the electronic health record
and being used to inform quality improvement and population management. Overall, 13,601 of these children had an im-
proved outcome. Seven of the teams had implemented their evidence-based interventions with ≥ 90% reliability, 83% of
teams were regularly using an electronic template to plan care for a child’s condition before an encounter, 89% had strati-
fied their population by severity of medical/psychosocial needs, 56% were using registry care gap data for population management,
and 72% were doing self-management assessments. Eleven teams achieved the numeric goal of 20% improvement in their
chosen outcome.
Conclusion: The results suggest that, by implementing quality improvement methods with multidisciplinary support, clin-
ical teams can manage chronic condition populations and improve clinical, functional, and patient-reported outcomes. This
work continues to be spread across the institution.

I t has been estimated that approximately 20% of children

in the United States suffer from a chronic condition1,2 or
have a special health care need.3 Yet, it has been reported
that they receive only half of the care recommended.4 Often
the care is episodic, oriented toward acute events, and does
not include the longer-term, longitudinal elements critical
to achieving better outcomes. Hospitalizations for children
with chronic and complex conditions are consuming an in-
creasing portion of inpatient care and resources.5–7 To optimize
clinical and functional outcomes, these children also require
outpatient, specialty-based follow-up after discharge. Im-
proving the health care system’s ability to deliver effective,
evidence-based chronic-condition care in the outpatient setting
is becoming increasingly important.
The Chronic Care Model was developed in the mid-
1990s to guide providers in delivering patient-centered and
evidence-based care in order to improve outcomes for pa-
tients with chronic illness.8 The goal is to enable more
productive interactions between informed and activated pa-
tients and a prepared and proactive health care team.9–13 Use
1553-7250/$-see front matter
© 2016 The Joint Commission. Published by Elsevier Inc. All rights reserved.
http://dx.doi.org/10.1016/j.jcjq.2016.12.002
of the Chronic Care Model has been shown to lead to im-
provements in care processes and quality for patients with
chronic illnesses, although there is often a delay in seeing
improvements in clinical outcomes.14
The 2010–2015 strategic plan for Cincinnati Children’s
Hospital Medical Center (CCHMC) set a goal of measur-
ing and improving clinical outcomes for children with chronic
conditions through population management, delivery system
improvements for reliable application of evidence-based care,
and coordinated, planned care with self-management support
for children, youth, and families. Although foundational work
had been done for patients with cystic fibrosis and inflam-
matory bowel disease,15–20 gaps remained between the care
we were providing and the best care we could provide. Teams
providing care for children with chronic and complex con-
ditions needed enhanced support and training to optimally
manage their clinical populations. Therefore, in 2012, the
Condition Outcomes Improvement (COI) Initiative was
launched to accelerate the pace at which disease-based teams
could, using the principles of improvement science, imple-
ment components of the Chronic Care Model and
standardized care delivery while identifying and closing gaps
in care. We report here on the details and results of the COI
Initiative.
102 Jennifer Lail, MD, FAAP, et al
METHODS
Setting
CCHMC is a large, urban pediatric academic medical center
that has maintained a significant focus on improving evidence-
based and family-centered care since the late 1990s.21
Questions from the Agency for Healthcare Research and
Quality Hospital Survey on Patient Safety Culture are in-
cluded on the survey administered to all employees every two
years. Quality and safety are promoted and rewarded in all
aspects of patient care. The James M. Anderson Center for
Health Systems Excellence (Anderson Center) at CCHMC
facilitates and supports a wide range of improvement
initiatives.
In fiscal year 2015 CCHMC had more than 33,000 in-
patient admissions, 100,000 emergency department visits,
and 916,000 specialty outpatient visits, and performed more
than 32,000 surgical procedures at the main campus and 10
neighborhood locations. Approximately 44% of patients have
Medicaid insurance. In early 2007 CCHMC began a phased
installation of enterprise electronic health record (EHR) soft-
ware from the Epic Systems Corporation.
Planning the Initiative
Between the fall of 2012 and the fall of 2014, 17 pediatric
and surgical divisions were invited to participate in the COI
Initiative. The global aim was to improve outcomes for pa-
tients and families with chronic and complex conditions.
Twenty-nine existing chronic condition improvement teams
were identified for participation. The specific aim was 20%
improvement in each team’s chosen outcome. Eighteen im-
provement teams participated fully in the initiative (Table 1).
The data reported here for those 18 teams were collected
from January 2013 through September 2015 (the end of
the first quarter of fiscal year 2016). Five of the remaining
11 invited teams participated in the initiative but had dif-
ficulty applying the Chronic Care Model because the
symptoms were defined by multiple possible etiologies (ex-
amples include fainting and pain as key diagnostic
mechanisms). These teams did not collect data after June
2015. Two others never fully engaged, and 4 started the
initiative more recently and continue to establish their base-
lines and collect data.
The COI teams consisted of physicians, nurses, care man-
agers, family members, mental health providers, and social
workers. CCHMC provided funding and access to staff from
Information Services, Patient Services, and the Anderson
Center with expertise in information technology and the
EHR, quality improvement (QI), evidence and measure-
ment, and data analytics.
Each clinical team worked from a sequenced curriculum
(summarized in Appendix S1, available in online article) to
define and stratify the population of interest, build a pop-
ulation registry in the EHR, select key evidence-based outcomes
and measurement strategies, and develop clinical tools and
Chronic Care Model Improves Pediatric Outcomes
processes to support the team’s improvement work. All but
one of the participating divisions had prior QI training.
The condition teams dedicated two hours each week for
eight to nine months to these tasks. They were guided by
the They were guided by the Team Roadmap for Improv-
ing Care for Children and Adolescents with a Chronic
Condition32 and supported by a multidisciplinary imple-
mentation team consisting of a QI consultant and data analyst
affiliated with their division, an Epic analyst from Informa-
tion Services, a clinical practice consultant from Patient
Services (Nursing and Allied Health), volunteer parent ad-
visors, and internal experts in evidence, measures, and chronic
care. QI, data analytic and support leaders from multiple
departments provided oversight, monitored progress toward
goals, and helped overcome barriers.
Each clinical team observed and mapped processes to de-
crease variation and increase reliability in care processes. A
key driver diagram template (based on evidence from the
literature, observed opportunities for improvement, and avail-
able baseline data) was available to help teams prioritize their
interventions (Figure 1). Improvement experts from the An-
derson Center guided teams’ improvement efforts using failure
mode and effects analysis,33 Plan-Do-Study-Act cycles,34 and
Pareto charts of failures.35 The Anderson Center also deliv-
ered weekly provider-specific feedback on team performance,
and documentation of the key clinical processes guided teams
to test actions to remediate suboptimal performance. Pro-
vider and team-level feedback on the overall outcome, process,
and patient-reported outcome measures was provided monthly
in the form of run and control charts.36,37
Forty-two parents of children with one or more of the
study conditions served as vital partners and engaged members
of clinical teams. Families were physically present at team
meetings and further participated in conference calls, elec-
tronic surveys, focus groups, and electronic communication
of parent input. Participating board-certified pediatricians
were eligible for Part 4 Maintenance of Certification credit
from the American Board of Pediatrics.38
Improvement Activities
Improvement activities focused on five goals: identifying the
target populations, selecting and measuring outcomes and sup-
porting processes, establishing pre-visit planning (PVP), building
and implementing care coordination, and assessing and ad-
dressing self-management support. The teams were free to
choose the interventions that they thought would work best
for their patient population. Implementation details are pro-
vided for the team focused on juvenile idiopathic arthritis (JIA).
Review of Evidence to Choose and Measure Clin-
ical Outcomes. With support from evidence appraisers
in the Anderson Center, clinical teams evaluated existing lit-
erature to select outcomes for measurement and identify best
practices to improve each outcome measure. If no existing
evidence was available, the teams developed best practices
Volume 43, No. 3, March 2017 103

Table 1. The 18 Condition Teams That Fully Participated in the Three-Year Condition Outcomes Improvement Initiative
Active Registry
Condition Population Outcome Measure Process Measure
Asthma—General 5,715 % patients 2–17 years of age whose asthma % patients for whom key elements of care were
Pediatrics was well controlled: most recent Asthma documented every visit: asthma severity,
Control Test22,* score ≥ 20 documentation of action plan, patient’s
perception of asthma control, pulmonary function
test in the past 13 months, flu vaccine received
Asthma—Pulmonary 1,390 % patients 4–20 years of age whose asthma % visits with Asthma Control Test score
was well controlled: most recent Asthma documented at each visit
Control Test score ≥ 20
Cardiomyopathy 1,295 % patients whose symptoms improved % patients whose symptoms improved since their
since their initial visit, as measured by the initial visit, as measured by the PedsQL23
Pediatric Quality of Life Inventory
(PedsQL)23
Chronic kidney 295 % patients with systolic blood pressure % patients with correctly measured and
disease below target documented blood pressure recorded
Fecal incontinence 571 % patients in bowel management program % completion of locally developed fecal
with improved fecal incontinence from incontinence Social Continence Survey by day 14
baseline to day 14
Food allergy 2,883 % patients with previously documented % patient charts with completed exit flow sheet
food allergies resolved on reevaluation of allergy status
General epilepsy 3,069 % patients with non-intractable epilepsy % completion of patient/family surveys (PedsQL,
who report seizure freedom for 12 months Pediatric Epilepsy Side Effects Questionnaire, and
Seizure Frequency)23–25 at or above 90%
New onset epilepsy 933 % decrease in new onset epilepsy patients % completion of patient/family surveys (PedsQL,
that remain below the unhealthy Pediatric Epilepsy Side Effects Questionnaire, and
range: < 65.4 on the PedsQL Seizure Frequency)23–25 at or above 90%
Hemophilia 880 % patients with severe hemophilia A and % severe patients on primary prophylactic factor
hemophilia B ≥ 3 years of age without replacement by age 3 years
inhibitor who have < 3 joint bleeds per year
Juvenile idiopathic 775 % patients with inactive disease: American % patients with American College of
arthritis College of Rheumatology criteria26 Rheumatology score recorded
Kidney transplant 98 % patients with systolic blood pressure % patients with correctly measured and
controlled documented blood pressure recorded
Major depressive 1,381 % patients who experience functional % completion of Global Assessment of
disorder improvement, as measured by the Global Functioning scale and suicide screening at every
Assessment of Functioning scale27 visit
Pathologic 3,029 % patients with an improved Clinical Global % completion of Clinical Global Impressions
aggression in Impressions scale28 scale28 and suicide screening at every visit
attention
deficit/hyperactivity
disorder
Menorrhagia 673 % patients with decrease in menorrhagia % visits in which menorrhagia assessment tool
assessment tool score (adapted from was collected at initial and follow-up visits
Philipp et al.29).
Posterior urethral 183 % nontransplant patients with stable renal % patients for whom renal staging assessment
valves function: no two-stage increase in the was performed
chronic kidney disease staging30 since initial
staging
Sickle cell disease 417 % patients whose fetal hemoglobin is ≥ 20% % patients ≤5 years of age started on or offered
hydroxyurea
Systemic lupus 130 % patients with controlled disease: % patients with Systemic Lupus Erythematosus
erythematosus Systemic Lupus Erythematosus Disease Disease Activity Index score completed at each
Activity Index31 score < 5 visit
Torticollis 3,504 % patients who achieved complete % patients receiving 5 components of treatment
resolution within 6 months of initial visit plan: neck passive range of motion, neck and
trunk active range of motion, symmetrical
development of movement, environmental
adaptations, parent/caregiver education
*References are found on page 111.
104 Jennifer Lail, MD, FAAP, et al Chronic Care Model Improves Pediatric Outcomes

Key Driver Diagram Template That Teams Used to Prioritize Their Interventions

Figure 1: A key driver diagram template was available to help guide and prioritize team interventions. The template in-
cluded SMART (specific, measurable, achievable, relevant, and time-bound) and global aims, addressed the theory or hypothesis
driving the aim, and listed interventions necessary to achieve the aims.

through consensus. The JIA team selected the stringent na-
tional criteria for inactive disease developed by the American
College of Rheumatology.26
The teams also identified key supporting processes that
had to be accomplished reliably to improve the chosen
outcome. The defined and validated clinical outcome mea-
sures fell into one of four primary categories: disease remission,
disease control, patient-reported outcomes (PROs), and
symptom management (Table 2).
Two teams chose to target a PRO for improvement. To
integrate data collection into clinic work flow, validated ques-
tionnaires for PROs were embedded in the EHR and on
electronic data collection tablets for completion by pa-
tients and families. The selected questionnaires measured
health-related quality of life, disease-specific physical func-
tion, and psychological functioning.
Development of Electronic Health Record
Registries and Tools. Developing an electronic popu-
lation base helped teams know which patients were being
seen for care, which were missing care or needed addition-
al services, and how their patients were doing clinically.
Clinical teams defined their patient populations and devel-
oped criteria for inclusion in patient registries embedded
within the EHR. The inclusion criteria chosen by the JIA
team were patients with a JIA diagnosis and at least one in-
person visit to a CCHMC JIA clinic in the past three years.
Curation of the registry was a combination of manual and
automated processes. Using EHR diagnosis coding grou-
pers and patient lists, teams identified patients for inclusion
in their population registry, then validated the registry to define
their active subpopulations based on patients seen within a
specific time frame. Electronic modifiers were applied to iden-
tify inactive patients. Each team identified both an individual
and a process to maintain registry accuracy over time re-
garding new patients, patients who have died, and patients
who have left the practice. On the JIA team, an advanced
practice nurse was responsible for maintaining the registry.
While new patients were added automatically based on In-
ternational Classification of Diseases, Tenth Revision, Clinical
Modification (ICD-10-CM) codes, she removed inappro-
priate or deceased patients and reviewed automated reports.
Electronic tools to support practice transformation,
such as risk-stratification tools, PVP templates, and
Volume 43, No. 3, March 2017
Table 2. Identified Outcome Measure Categories
Type of Outcome Measure Description
Disease remission outcomes Measures the percentage of
the active population who met
the criteria for disease
remission, as defined by
existing evidence—based on
results captured during the last
encounter. Measured as a
population.
Disease control outcomes Measures the percentage of
active patients who met the
criteria for having maintained
or improved disease control
based on available evidence.
Can be measured as a
population-based measure or
encounter-based measure.
Patient-reported Measures the percentage of
outcomes—quality of life active patients who report
quality of life scores that
identify them as in a healthy
range. Can be used as a
population- or encounter-
based measure and also
measured negatively (e.g.,
percentage of patients
reporting unhealthy quality of
life)
Symptom management Measures the percentage of
patients who are able to
manage their symptoms and
keep them under control, as
defined by evidence. Measure
could be encounter- or
population-based and would
typically be used in cases in
which remission is not viable.
self-management assessments, were developed in the EHR.
Seven standard care gap reports were built to identify missed
care, needed services, or unanticipated health care use. The
care gaps varied by team and condition and included patient
needs, resource use beyond the clinic (emergency depart-
ment visits, hospital admissions), patients requiring follow-
up, failure to keep appointments, self-management issues,
unmet psychosocial needs, and the caseloads of care man-
agers and social workers. Data infrastructure and reporting
systems were created to support measure development, ana-
lytics, and enhanced care gap reports from the EHR data.
Patient Stratification. To identify patients with the
highest risk for unmet needs, medical and psychosocial com-
plexity were assessed to match an appropriate level of care
to each patient’s need. To triage for a population needs
105
Calculation Teams Using This Measure
Number of patients in • Food allergy
remission/active population • Juvenile idiopathic arthritis
• Torticollis
Number of patients with • Asthma—General pediatrics
disease control/number of • Asthma—Pulmonary
eligible patients • Chronic kidney disease
• General epilepsy
• Hemophilia
• Kidney transplant
• Posterior urethral valves
• Sickle cell disease
• Systemic lupus
erythematosus
Number of patients in healthy • Cardiomyopathy
range/number of eligible • New onset epilepsy
patients
Number of patients with • Fecal incontinence
symptoms under control/ • Major depressive disorder
number of eligible patients • Pathological aggression in
attention deficit/hyperactivity
disorder
• Menorrhagia
assessment, two teams that addressed large population con-
ditions (epilepsy, cardiomyopathy) used the Pediatric Medical
Complexity Algorithm for an initial medical stratification.39
All clinical teams, including epilepsy and cardiomyopathy,
used a locally developed matrix to stratify their patients into
one of three levels of clinical medical complexity (stable health
status, variable health status, and declining health status) and
one of three levels of social complexity (prepared proactive
patient/family; intermittent barriers to care and/or signifi-
cant adherence issues; and complex, persistent barriers to care
and/or serious child/family safety issues). Teams that con-
sidered all of their patients to be at equal medical risk did
not apply risk stratification. Although care gap reports and
self-management assessments were adaptable to all condi-
tions, some teams chose to defer their use until they had the
capacity to do this level of population management. The JIA
106 Jennifer Lail, MD, FAAP, et al
team did further sub-stratification, using its internally de-
veloped decision support tools, to focus on children who had
not achieved disease inactivity.
Planning and Coordinating Care Before, During,
and After Visits. Teams examined the flow of ambula-
tory patients through a clinic visit and the tasks performed
by each team member in order to streamline processes, elim-
inate duplicative work, and reallocate work to the most
appropriate team member.40 Registered nurses and care man-
agers led care coordination activities for medically high-
risk patients. Social workers managed and directed activities
to mitigate psychosocial risk. Together, they integrated the
plan of care and provided support for patients and families.
Supported by their population registries, teams devel-
oped a PVP note and process to prepare for upcoming
ambulatory encounters. For children stratified at the highest
level of medical complexity, processes were standardized to
identify interim health care encounters, clinical services/
referrals needed, and a child’s indicated lab/imaging needs
in advance of a clinical visit. Some teams obtained parent
input prior to the visit via phone calls by clinic staff, ques-
tionnaires on paper and electronic tablets, and, in some cases,
use of an EHR patient portal. The JIA team has parents ac-
tively advising the team at local and national levels through
the Pediatric Rheumatology Care and Outcomes Improve-
ment Network.41
The PVP note, embedded into the EHR, summarized care
coordination needs, required interventions, and self-
management or adherence issues. Nurses, social workers, and
providers used the PVP note to recommend care to support
the measured outcomes and related processes, and to pend
orders for the upcoming visit and follow-up care. Each team
defined its population needing PVP and developed a reli-
able method to ensure review of the planning note before
a patient visit. Each condition team also mapped its staff as-
signments and work flows for care support before, during,
and after the visit. The team’s PVP helped to identify and
prioritize needed care and helped the team work together
with families to complete needed labs, imaging, and refer-
rals and to access resources.
An experienced registered nurse used the JIA PVP prior
to every patient visit. This nurse applied the team’s deci-
sion support rules to determine which visits required more
attention to therapeutic regimen, adherence issues, psycho-
social support, missed care, or follow-up. Physicians, nurses,
and medical assistants then planned ahead for the visit,
pending orders for needed care (labs, referrals, vaccines,
imaging) and gathering pertinent health information from
outside of CCHMC.
Self-Management Support. Staff from each clinical team
participated in self-management support skills training and
developed their clinic work-flow processes to assess patient/
family need for support. A self-management assessment tool
in the EHR was used to assess patient/family confidence in
Chronic Care Model Improves Pediatric Outcomes
managing care at home, their level of worry, their con-
cerns, and their need for support. Some teams partnered with
their parent advisors to develop additional tools for use in
clinic visits to prompt families to ask more questions and
discuss concerns. The JIA team concentrated on patient goals
for the visit, self-efficacy, distress/worry, and adherence, thus
allowing resources to be focused on those with higher needs
and complexity. The team also used a barriers checklist to
allow patients or families to identify specific difficulties in
managing care at home related to oral medications, injec-
tions, infusions, or occupational or physical therapy exercises.
Study of the Initiative
Data Collection. Baseline data were collected by the con-
dition teams as they built and tested their patient registry,
tools, and processes. The study population was defined by
chronic condition, with criteria for inclusion/exclusion based
on a search of available evidence and concurrence from the
team. In general, a broad population for a condition in-
cluded all patients with the condition who were seen by any
CCHMC provider within the previous 36 months. Each con-
dition team then defined active subpopulations of patients
for whom the team applied therapeutic interventions and
collected data to measure improvement. Reported data on
outcome and process measures are for the condition’s active
subpopulation. Examples of subpopulations included disease
categories (for example, new onset epilepsy vs. general ep-
ilepsy), geographic groups, age groups, and other relevant
stratification appropriate for the condition. Reported data
on care coordination, care-gap reporting, and self-management
reports were for the entire active registry population.
Measures. Teams identified the key interventions that
would affect the overall outcome and tracked their reliabil-
ity. The goal was ≥ 90% reliability, or ≤ 1 error per 10
opportunities.42 Examples of reliability measures included
provision of education about the condition, accurate disease
staging, completion of necessary lab tests, and completion
and documentation of measurement tools in the EHR.
Data Analysis. QI tools, including run charts and sta-
tistical process control (SPC) charts,36,37 were used to track
changes in outcomes and process reliability over time. SPC
methodology worked well for measuring improvement in out-
comes for teams that were able to view their patients in
cohorts or use visits/encounters. Following SPC rules, each
goal was assessed based on the centerline of the outcome
measure to account for variation and to ensure that the system
was performing at the desired level. However, population-
based outcome measures that captured the percentage of a
population with inactive or improved conditions did not
comply with the assumptions associated with SPC. This was
typically caused by autocorrelation in the outcome measure
that was based on population results rather than indepen-
dent observations. For such autocorrelated data, we compared
results for the population measure at baseline to the results
Volume 43, No. 3, March 2017 107

during the last quarter of data collection and used time series
modeling to identify outliers in the process.43 Goal achieve-
ment was assessed by doing a t-test comparison between the
population results during the baseline period and the results
of the last quarter. Approaching this using an interrupted
time series may have been appropriate if we were not engaged
in active QI work, but teams used multiple tests that would
have caused several interruptions in the time series and likely
confounded the results. For this report, a comparison of the
baseline to current performance was graphed using a bar chart.
To estimate the percent improvement in outcome mea-
sures above that expected had the interventions not been
initiated, we assumed that the process would have re-
mained consistent and produced the same results if the
interventions had not been implemented.
Human Subjects Protection
A description of the initiative was submitted to the CCHMC
Institutional Review Board, which determined that it did
not constitute human subjects research.
RESULTS
Patients and Teams
As of October 1, 2015, data from 27,221 active patients with
chronic conditions were entered into EHR–embedded patient
registries for these conditions. Eleven of the 18 fully par-
ticipating condition teams (61%) achieved the goal of 20%
improvement in their chosen clinical outcome (Figure 2).
The posterior urethral valves team began with the goal of
maintaining stable renal function. However, because the team
was not doing any renal staging assessment at that time, team
members did not have the information required to define
an achievable goal. The team selected prevention of an in-
crease of two chronic kidney disease stages as the goal but
struggled with reliable measurement and documentation of
renal staging. After receiving its data, the team chose to con-
tinue with this nonaggressive goal while working on process
reliability of renal staging assessment. Two of the 18 teams
showed lesser but measurable improvement, and the re-
maining 5 either maintained or showed a decline in their
baseline performance.
Evidence-Based Interventions
Seven of the teams implemented their evidence-based in-
terventions with ≥ 90% reliability. Teams were guided by
regular review of run charts for outcome improvement and
reliability of their key process measures. Appendix S2 (avail-
able in online article) shows a sample run chart for a JIA
outcome measure and a control chart for a JIA process
measure. Fifteen condition teams (83%) regularly used an

Primary Outcome Measures for Each Condition at Baseline and the End of the First Quarter (Q1) of Fiscal Year 2016

Figure 2: The specific aim was 20% improvement in each team’s chosen outcome, which 11 of the 18 fully participating
condition teams achieved. Two teams showed lesser but measurable improvement, and the remaining 5 teams either main-
tained or showed a decline in their baseline performance. ADHD, attention deficit/hyperactivity disorder.
108 Jennifer Lail, MD, FAAP, et al Chronic Care Model Improves Pediatric Outcomes

Table 3. Use of Elements of the Chronic Care Model

Care Gap Self- Management
Condition Registry Risk Stratification Pre-visit Planning Reports Assessment
Asthma—General Yes Yes Yes, every patient, every No No
Pediatrics visit
Asthma—Pulmonary Yes Yes All new visits and all Yes No
asthma follow-up
appointments
Cardiomyopathy Yes Yes, Pediatric Medical Yes Yes Yes
Complexity Algorithm
(PMCA)*
Chronic kidney disease Yes Yes Yes Yes Yes
Fecal incontinence Yes Yes Yes No No
Food allergy Yes No Yes Yes No
General epilepsy Yes Yes, PMCA Yes, tier 2 and 3 follow-ups No Yes
New onset epilepsy Yes Yes, PMCA Yes, tier 2 and 3 follow-ups No Yes
Hemophilia Yes Yes Yes, all comprehensive Yes Yes
clinic visits, all tiers
Juvenile idiopathic arthritis Yes Yes Yes Yes Yes
Kidney transplant Yes Yes Yes Yes Yes
Major depressive disorder Yes Yes No No Yes
Pathologic aggression in Yes Yes No No Yes
ADHD
Menorrhagia Yes Yes Yes Yes Yes
Posterior urethral valves Yes Yes Yes Yes Yes
Sickle cell disease Yes Yes, all nonurgent patient Yes No Yes
visits
Systemic lupus Yes Yes Yes Yes Yes
erythematosus
Torticollis Yes No, but screened for No No No
comorbidities
*See reference 39 on page 111.
ADHD, attention deficit/hyperactivity disorder.

electronic template to plan care for a child’s condition before
an encounter (Table 3). Sixteen teams (89%) stratified their
population by severity of medical/psychosocial needs. Ten
teams (56%) used registry care gap data for population
management, and 13 teams (72%) did self-management
assessments.
During the initiative, 2 symptom-based teams redi-
rected their active QI work. After the syncope team better
understood its patient population, the team chose to switch
to a more relevant outcome around value by conducting
phone follow-ups instead of face-to-face visits in the low-
risk population sector. After achieving its their first goal, the
menorrhagia team began to address a second outcome aimed
at preserving fertility in oncology patients.
Patient Outcomes
Overall, 13,601 of the children included in the active reg-
istry population (50%) had the desired or an improved
outcome. Table 4 estimates the percent improvement in
outcome measures above that expected had the interven-
tions not been initiated for all 18 conditions (Table 4a) and
for just the conditions that showed improvement (Table 4b).
Twelve percent more children in the active registry popu-
lation achieved the desired outcome as a result of the effort.
The three teams that worked toward outcomes in disease re-
mission saw the largest percent increase in patients achieving
the desired outcome, 25%. The nine teams that pursued
disease control saw the smallest improvement in the pa-
tients achieving the desired outcome, 3%. For the two teams
that targeted a PRO for improvement, 21% more patients
met the desired outcome. The four teams focused on
symptom management saw a 20% improvement in the
number of patients achieving their goal.
DISCUSSION
Our results suggest that, by implementing QI methods and
with multidisciplinary support, clinical teams can manage
diverse populations with chronic conditions and improve their
outcomes. Our strategy was the delivery and measurement
of the right care to each patient, data feedback to clinical
teams, and planned, deliberate population management
strategies for groups of children/youth with a specific chronic
Volume 43, No. 3, March 2017
Table 4. Outcome Measure Results
No. of Children with
Outcome Measure an Improved Outcome
a. Results for All 18 Conditions
Disease remission 3,032
Disease control 6,454
Quality of life 1,398
Symptom management 2,717
All outcomes 13,601
b. Results for the Conditions That Showed
Improvement
Disease remission 2,538
Disease control 5,074
Quality of life 894
Symptom management 1,865
All outcomes 10,371
condition, while identifying and addressing the family’s self-
management needs.
Eleven of the 18 chronic condition teams in the COI Ini-
tiative achieved the goal of 20% improvement in their chosen
clinical outcome. Two other teams showed smaller, but mea-
surable, improvement by October 2015. Five teams were
unable to demonstrate or sustain improvement. Eleven other
teams originally invited to participate completed the measure
selection, electronic registry build, and training around care
coordination and self-management, but had difficulty ap-
plying the data collection and care transformation reliably
in their clinical settings. Those teams cited time for QI work,
staff turnover, leadership changes, and competing clinical and
research priorities as barriers to implementation of all the
components of the COI Initiative. Generation of relative value
units (RVUs) in clinical care was a specific barrier to time
dedicated to QI.
No new full-time employees were added in order to im-
plement this initiative. Each condition team leveraged new
work to its existing staff. Teams whose division director was
committed to standardization and accountability were more
able to sustain the work. Teams with prior QI education or
experience understood the work more easily. Successful teams
also had a physician champion, motivation to change, and
alignment with CCHMC’s strategic plan metrics. Prior ex-
perience working together, as well as dedication to process
reliability, accountability for data collection, commitment
to reliable application of evidence-based care, and adequate
support staff to apply care coordination and self-management
practice, helped make these teams more successful. Clinical
teams with broad representation from their providers, nurses,
families, social workers, and mental and nutritional health
providers found it easier to select meaningful, measurable
outcomes and identify the supporting key processes. Parents
effected change in areas such as measurement selection, self-
management tools, clinic processes, and communication
109
No. Expected to % Improvement Greater
Have Improved Had the than Expected Had the
Interventions Not Been Interventions Not Been
Implemented Implemented
2,434 25
6,257 3
1,152 21%
2,260 20
12,103 12
1,802 41
4,815 5
648 38
1,382 35
8,647 20
strategies. The family perspective kept teams focused on mean-
ingful goals via team meetings, focus groups, and review of
patient education materials. Successful teams also used the
data completion reports, provider/team-specific feedback, and
coaching from QI consultants to help drive results.
A generic version of a PVP tool (which was developed based
on the combined knowledge of what condition teams iden-
tified as important to consider before a visit) is now available
to all CCHMC providers in our EHR (Appendix S3, avail-
able in online article). The JIA team has spread its specific
PVP tool design and decision support rules nationally through
the Pediatric Rheumatology Care and Outcomes Improve-
ment Network. The JIA and other teams have instituted
monthly population management sessions to close care gaps
and for peer review of their most challenging cases to plan
care.
Although the improvement work was based in the out-
patient clinic setting of CCHMC, care planning and
coordination necessarily bridged, with the child, into inpa-
tient and acute care settings. Condition-specific pediatric
collaborative networks have used similar strategies across mul-
tiple institutions,44–48 but, to our knowledge, such clinical
registry development, practice redesign, and self-management
support have not been applied and measured in large popu-
lations of children with a broad range of chronic conditions
within a single hospital system.
Work with the 18 teams has taught us that outcomes need
to be clinically meaningful and amenable to improvement.
Management of a population defined by symptoms with mul-
tiple possible etiologies, such as syncope or menorrhagia, were
less appropriate for the application of the Chronic Care Model
elements. Leaders from Patient Services worked with teams
to clarify roles and responsibilities and use each staff mem-
ber’s skill to the maximal advantage in improving care, but
changes in leadership and staffing challenged some teams,
particularly if attrition occurred among condition champions.
110 Jennifer Lail, MD, FAAP, et al
Improvement requires dedicated time and bandwidth,
and team leaders must commit to standardization and
accountability.
Although an initiative of this large scale may seem pro-
hibitive in settings with less robust QI and information
technology support, the concepts of population identifica-
tion, stratification, outcome and process measurement, and
planned, coordinated care can be applied in smaller set-
tings. Indeed, these same concepts align with the Association
of Maternal & Child Health Programs’ Standards for Systems
of Care for Children and Youth with Special Health Care
Needs.49 Even locations without access to an electronic reg-
istry can identify patient populations and stratify them
according to their medical and psychosocial needs. Clini-
cal review of a patient list can identify patients missing
appointments or care, or those whose care is marked by emer-
gency department visits, admission, or readmissions. Risk
stratification of the patient, both medically and psychoso-
cially, helps with appropriate deployment of care coordination
and self-management supports and permits a simple process
of PVP of care prior to an encounter. All CCHMC teams
were encouraged to develop and test both tools and pro-
cesses on paper prior to implementation in the EHR. In less
resourced settings, such nonelectronic QI efforts can be
applied.
Several limitations may limit the generalizability of our
results. We have reported results here only for the teams that
were able to fully participate in the initiative. In support of
this initiative, CCHMC provided funding and access to staff
from Information Services, Patient Services, and the An-
derson Center with expertise in information technology and
the EHR, QI, evidence and measurement, and data analyt-
ics. The fact that our teams defined the active subpopulation
for intervention as patients who had a clinical, condition-
specific encounter for care at CCHMC during a specified
time frame limits the conclusions that can be drawn. Ad-
ditional study is required on the children with these conditions
who have not been seen for care. Additional limitations were
that the treated patients were predominately children and
that, except for general pediatricians treating asthma pa-
tients, participating physicians were specialists.
This initiative began with a focus on population man-
agement, rather than raw numbers or results for individual
patients. Twenty percent improvement was considered an in-
spirational goal. Over time, the similarities in the outcomes
chosen became clear and we began to categorize the teams
according to outcome type (disease remission, disease control,
patient-reported/quality of life, and symptom manage-
ment). Because each chosen measure was supported by an
operational definition that specifies the criteria used for de-
termination of inclusion and goal achievement, we chose to
report the numbers of children in a population that showed
outcome improvement in the four outcome categories.
Our work to improve clinical outcomes at scale for chil-
dren with chronic conditions continues. Four new teams have
Chronic Care Model Improves Pediatric Outcomes
started to collect data. Guided by defined, measurable pop-
ulation outcomes and key process measures, all teams continue
to standardize patient care. Because timely and accurate data
are key drivers for improvement, we are working to in-
crease access to real-time outcome and process data to COI
teams engaged in active improvement, with data attribu-
tion by provider and clinic. Teams have learned to use their
own registry and care gap reports within the EHR, and 11
of the COI teams are developing new evidence-based algo-
rithms for other aspects of their care. The teams that dropped
out still have access to their registry and electronic tools. Some
teams are using these for population management. However,
they are not collecting data and driving QI. As of this time,
there are no plans to engage them in a future improvement
effort. Beginning in January 2016, a new care manage-
ment model was implemented throughout CCHMC to
identify those children at highest medical and psychosocial
risk for intensive care management and self-management
support and the staffing support needed for care coordina-
tion. These applications of the components of the Chronic
Care Model, along with research and the implementation
of new discovery, will continue to support improved out-
comes for children with chronic conditions.
CONCLUSION
With collaborative support for population management,
outcome measurement, and implementation of compo-
nents of the Chronic Care Model guided by QI methodologies
and data analytics, clinical teams can improve outcomes for
their pediatric patients with chronic conditions.
Acknowledgments. The authors extend special thanks to all the COI teams
for their collaboration, with particular gratitude to the Rheumatology Di-
vision at CCHMC for serving as an exemplary condition. This work and
the article could not have existed without their dedication to outcomes
improvement.
Conflicts of Interest. All authors report no conflicts of interest.
Jennifer Lail, MD, FAAP, is Assistant Vice President, Chronic Care Systems,
and Associate Professor of Clinical Pediatrics, Complex Care Center, James
M. Anderson Center for Health Systems Excellence, Cincinnati Chil-
dren’s Hospital Medical Center. Pamela J. Schoettker, MS, is Medical Writer,
James M. Anderson Center for Health Systems Excellence. Denise L. White,
PhD, MBA, formerly Assistant Professor/Director, Quality and Transfor-
mation Analytics, is Assistant Professor—Educator, Carl H. Lindner College
of Business, University of Cincinnati. Bhavna Mehta, MBA (MIS), is Di-
rector, Quality and Transformation Systems Architecture, James M. Anderson
Center for Health Systems Excellence. Uma R. Kotagal, MBBS, MSc, is
Senior Vice President for Quality, Safety and Transformation, and Execu-
tive Director, James M. Anderson Center for Health Systems Excellence.
Please address correspondence to Jennifer Lail, jennifer.lail@cchmc.org.
ONLINE-ONLY CONTENT
See the online version of this article for Appendix 1. The
Sequenced Curriculum Completed by Each Team. Appen-
dix 2. A Run Chart for a JIA Outcome Measure and a
Control Chart for a JIA Process Measure. Appendix 3. A
Volume 43, No. 3, March 2017
Generic Version of a PVP Tool Developed and Now Avail-
able to All CCHMC Providers in the Electronic Health
Record.
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