Closing the Gap in Children's Quality Measures: A Collaborative Model

Journal for Healthcare Quality4

Closing the Gap in Children’s Quality

Measures: A Collaborative Model

Ellen Schwalenstocker, Hema Bisarya, Stephen T. Lawless, Lisa Simpson, Cheri Throop, Donna Payne

Attention to the production of comparative

information on healthcare quality has esca-

lated over the last 3 decades. However, children

are frequently missing from national efforts to

measure and report on quality. Over a decade

ago, a summary of workshops conducted by

the National Research Council and Institute of

Medicine (IOM) concluded that “additional

indicators are needed to assess the quality of

children’s health care” (Durch, 1996, p. 52).

This need also was identified by the President’s

Advisory Commission on Consumer Protection

and Quality in the Health Care Industry in

1998.

The Pediatric Data Quality Systems (Pedi-

QS) Collaborative was established in 2002

by the Child Health Corporation of America

(CHCA), Medical Management Planning/

BENCHmarking Effort for Networking

Children’s Hospitals (MMP/BENCH), and the

National Association of Children’s Hospitals

and Related Institutions (NACHRI), with input

from other organizations focused on quality

and children’s healthcare, to address this gap.

The collaborative designed a framework and

methodology for identifying improvement

opportunities and practices and established a

model for developing consensus-based measure

sets. The consensus model is particularly

important in light of methodological limitations

in developing quality measures and a limited

evidence base for pediatric care (Schuster et

al., 1997). In this article, we discuss the Pedi-QS

framework and methodology and the initial

measures identified through the collaborative.

We describe efforts to continually incorporate

learning into the methodology. We conclude

with future directions for advancing healthcare

quality measurement and improvement for

children and adolescents.

Why Do We Need Comparative Quality Information?In general, dissemination of comparative per-

formance information is expected to enhance

healthcare quality by (1) providing momentum

for providers to improve and (2) enabling con-

sumers to make informed choices (National

Quality Forum, 2002). Recent studies have sug-

gested that the first mechanism may be work-

ing. Publishing measures on adult healthcare

quality through initiatives such as the Hospital

Quality Alliance (HQA) Hospital Compare Web

site, Joint Commission’s Quality Check, and

Premier/Centers for Medicare and Medicaid

Services (CMS) pay-for-performance demon-

stration has been associated with improved

performance (Jha, Li, Orav, & Epstein, 2005;

Joint Commission, 2007). There is no reason

to expect that these same market mechanisms

would not be similarly effective for children’s

healthcare. And, just as in adult care, significant

gaps in children’s healthcare quality exist. For

example, a recent article by Mangione-Smith

et al. (2007) reported that children received

evidence-based care less than half of the time in

ambulatory care settings.

Why Are Children’s Measures Behind?Despite gaps in performance and evidence of

links between quality measurement, reporting,

and quality improvement, the lack of quality- of-

care measures for children and adolescents is

well recognized (Beal et al., 2004; Dougherty &

Simpson, 2004; Miller, Gergen, Honour, & Zhan,

2005). Major reasons for the lack of measures

include the small economic impact of children’s

healthcare on overall healthcare expenditures

and the unique methodological challenges in

Key WordsPedi-QS

Pediatric Data Quality Systems

performance improvementpublic reporting

quality improvementquality measurement

Abstract: The need for measures of the quality of healthcare

provided to children and adolescents is well documented.

However, children have been underrepresented in national

healthcare quality measurement and reporting efforts. The

Pediatric Data Quality Systems (Pedi-QS) Collaborative is

addressing this gap. Two consensus measure sets and an

assessment of nursing-sensitive indicators in pediatric care

have been produced through the collaborative. The framework

and measure set development process are described. Lessons

learned from applying the process are summarized, and future

directions are suggested. Voluntary collaborative efforts are

vital for advancing children’s measures, and national support

and funding are also needed.

Journal for Healthcare Quality

Vol. 30 No. 5 September/October 2008 5

developing reliable and valid measures of quality

for children and adolescents.

On average, healthcare expenditures on

children accounted for $55 –$75 billion annu-

ally between 1997 and 2004, or 10%–12% of

total national health expenditures, and this

proportion has been dropping slightly over

time (Chevarley, Owens, Zodet, Simpson,

& McCormick, 2006; Simpson et al., 2004).

Advancement of quality initiatives among adults

has been strategically supported by the Medicare

program. Although Medicaid and the State

Children’s Health Insurance Program (SCHIP)

served almost one in every three children in

2005, these state–federal partnership programs

have not exerted national leadership on quality

issues (Simpson, Fairbrother, Hale, & Homer,

2007).

Methodological challenges to measurement

in pediatrics are well documented and include

the diversity and uniqueness of settings in which

children receive care (e.g., schools, day care

centers, community centers), developmental

factors, variations in the patterns of cost and

diagnoses associated with different age groups

within the pediatric population, small numbers

of children with specific conditions, and lack of

evidence regarding best practices (Agency for

Healthcare Research and Quality [AHRQ], n.d.;

Palmer & Miller, 2001).

A large proportion of quality measures that

do apply to children focus on preventive care

(Schuster et al., 1997; Simpson, Dougherty,

Krause, Ku, & Perrin, 2007). A study of

Medicaid and SCHIP directors in 40 states

conducted by Health Management Associates

(HMA) under contract with the National

Association of Children’s Hospitals (NACH)

found that a large majority (85%) of Medicaid

and SCHIP programs require one or more

National Committee for Quality Assurance

(NCQA) Healthcare Effectiveness Data and

Information Set (HEDIS) measures, most com-

monly preventive care measures (Duchon &

Smith, 2006). Only eight programs reported

using inpatient performance measures focused

on patient safety, processes of care, or infrastruc-

ture to support quality and safety.

Although no one would argue about the

importance of preventive care for children and

adolescents, the lack of standardized quality

measures available for reporting on acute and

chronic care, particularly in hospital settings,

is problematic. Mangione-Smith and McGlynn

(1998) noted that children with the most severe

conditions are “potentially the segment of the

pediatric population that can be most affected

by variations in the quality of care” and that

improvement in the care for these children “is

likely to have the largest impact on quality of life

and longevity” (p. 1059).

How Is Pedi-QS Closing the Gap?As leaders in children’s healthcare quality recog-

nized that children’s hospitals could be subjected

to measurement (and accreditation) using adult

measures unsuitable for pediatrics and, more

important, that insufficient measures for improv-

ing children’s healthcare quality existed, sev-

eral organizations came together to change the

dynamic. The Pedi-QS Collaborative effort was

formed to address the gap in quality measures,

focusing initially on measures for acute and

chronic care in hospital settings. On behalf of

all children’s hospitals, CHCA, MMP/BENCH,

and NACHRI met with the Joint Commission in

2002 to clarify requirements for children’s hospi-

tals with regard to core measurement and were

encouraged to propose core measures meaning-

ful for children’s healthcare.

With this charge, CHCA, MMP/BENCH,

and NACHRI convened representatives from

13 children’s hospitals and designed a frame-

work to identify improvement opportunities

and measures across multiple domains of qual-

ity and the continuum of patient and family

needs. Accordingly, the Pedi-QS framework is

designed within the context of the Institute of

Medicine’s (IOM) approach for developing a

national healthcare quality report, Envisioning the National Health Care Quality Report (Hurtado,

Swift, & Corrigan, 2001), which links the qual-

ity aims articulated in the IOM (2001) Crossing the Quality Chasm report and the patient needs

identified by the Foundation for Accountability

(FACCT). At this two-dimensional level, the

framework allows for the identification of prac-

tices and measures on areas that cut across

clinical conditions, settings of care, and types

of providers (e.g., coordination of care, medi-

cation safety). This is especially important in

children’s healthcare, given the methodological

challenges (e.g., small numbers of children with

specific clinical conditions) and unique aspects

of children’s healthcare described previously in

this article.

With the two dimensions of quality aims

and patient and family needs as the essential

foundation, other dimensions (e.g., clinical

conditions, service lines, provider types, care


settings) can be overlaid on the framework.

The overarching principle is that robust sets of

measures—whether or not these measures are

specific to a clinical condition or service line or

type of provider—will address all of the IOM

quality aims (safety, timeliness, effectiveness,

efficiency, equity, patient-centeredness) across

the continuum of patient and family needs. At

the time of its development, this multidimen-

sional framework of quality measurement was a

unique feature of our approach.

The addition of measures on pain is an exam-

ple of how the framework was used to identify

measures in the pediatric critical care setting.

Measures in use in existing pediatric critical care

data programs mostly addressed the quality aims

related to effectiveness (e.g., severity-adjusted

mortality, readmission rate) and efficiency (e.g.,

length of stay). The framework assisted the

panel in identifying the need for additional

measures on patient-centeredness, including

pain. In addition, the framework points to the

need for more measure development in the

areas of timeliness, equity, and patient safety.

Through ongoing learning, the collaborative

has developed a seven-step process to establish

consensus-based measure sets (Figure 1). The

iterative process includes (1) issuing a call

for measures and synthesizing the results, (2)

convening experts to review and assess the mea-

sures against criteria and obtain consensus on

measures that should be moved forward, and (3)

soliciting broad feedback from children’s hospi-

tals and other stakeholders. The criteria used

to evaluate measures also were derived from

the IOM’s Envisioning the National Health Care Quality Report (Hurtado et al., 2001) and include

importance, scientific soundness, and feasibility.

To support the development of standardized

measures, the Pedi-QS method includes iden-

tifying the data elements to support each pro-

posed measure, including precise definitions of

numerators and denominators.

Testing, Building, and Expanding the Pedi-QS Framework and ApproachUsing this framework and methodology, the

Pedi-QS Collaborative has worked to close the

gap in children’s quality measures by evaluating

or making nationally available 25 inpatient

children’s quality measures or indicators (Table 1). The depth and breadth of the Pedi-QS process

has been spread to the pediatric community

in the United States and internationally.

Following calls for measures, 133 measures

were received. Input from 56 content experts,

including representatives of national healthcare

stakeholders, and widespread feedback from

the children’s hospital community contributed

to the final consensus-based recommendations

(Table 1). Today, the contributions of the Pedi-

QS Collaborative have resulted in measures

adopted by the Joint Commission, measures

endorsed by the National Quality Forum (NQF),

and measures approved by the Hospital Quality

Alliance (HQA). A publicly available Web site

(www.pediqs.com) provides the methodology,

framework, and consensus measure sets.

To illustrate how the Pedi-QS framework and

collaborative process have developed over time,

we now describe the development of measure

sets for children’s asthma care and pediatric crit-

ical care and the assessment of nursing-sensitive

indicators for pediatric hospital settings.

Testing the model using the lens of a clinical condition—children’s asthma care: Children’s asthma care was an

obvious starting point for testing the

Pedi-QS framework. Asthma is the most

common chronic disease among children

(AHRQ, 2002) and is the second most

common reason for admission among

children admitted to the hospital for

illness (Owens, Thompson, Elexihauser, &

Ryan, 2003). A well-established evidence

base exists to inform the identification of

Figure 1. The Pediatric Data Quality Systems (Pedi-QS) Process for Measure Evaluation

Create and convene multidisciplinary and stakeholder expert panel.

▼

Field call for measures to children’s hospitals.

▼

Review and categorize measures.

▼

Conduct stepwise and iterative process for specifying and assessing measures.

▼

Vet candidate measures across the larger group of children’s hospitals.

▼

Complete final review reflecting consensus by the expert panel.

▼

Inform pediatric community and national stakeholders of final results.


measures (e.g., National Heart, Lung, and

Blood Institute, 2007). Following a 1-year

effort, six asthma care measures, as well as

the Pedi-QS framework and methodology,

were received enthusiastically by the

Joint Commission in December 2002. In

December 2006, the steadfast efforts of

the Pedi-QS Collaborative were recognized

with the Joint Commission’s adoption

of three of the children’s asthma care

measures. Beginning in July 2008, data on

two of these measures will be posted on

Hospital Compare for hospitals submitting

these measures as core ORYX measures to

the Joint Commission (Table 1).

Table 1. Measure Review—Version 2 (continued)

Date of Completion Review Process Measure Name Status

Priority Area: Asthma

2002 Convened content experts from 13 hospitals

Call for measures resulted in 33 measures used inter-nally by hospitals and/or available through vendors

Initial review narrowed to 9 measures

Six measures retained fol-lowing comment period (25 hospitals commented)

Joint Commission expert panel and pilot testing resulted in 3 measures for Joint Commission ORYX core measure set

1. Return to hospital (i.e., ED, OS, or inpa-tient admission) with same diagnosis within 7 days following inpatient discharge

Not retained as core measure following pilot testing

1a. Return to hospital with same diagnosis within 30 days following inpatient discharge


2. Return to hospital with same diagnosis with-in 7 days following ED or observation stay


2a. Return to hospital with same diagnosis within 30 days following ED or observa-tion stay


3. Use of relievers for inpatient asthma Endorsed by NQF

Included in Joint Commission CAC core measure set

Included in Hospital Compare beginning in July 2008

4. Use of systemic corticosteroids for inpatient asthma

Endorsed by NQF


Planned for inclusion in Hospital Compare in 2008*

5. Risk-adjusted length of stay Not retained as core measure following pilot testing

6. Home management plan of care discussed with patient/caregiver

Endorsed by NQF


Planned for inclusion in Hospital Compare in 2008*

Priority Area: Pediatric Critical Care

2005 Convened 27 content experts, including multiple disciplines and representa-tives from Joint Commission

51 measures identified from call for measures

Expert subgroups formed to assess measures in specific areas

Public comment period included 290 respondents from 135 hospitals

1. PICU standardized mortality ratio Endorsed by NQF

2. PICU severity-adjusted length of stay Endorsed by NQF

3. PICU unplanned readmission rate Endorsed by NQF

4. Review of unplanned readmissions Endorsed by NQF

5. PICU pain assessment on admission Endorsed by NQF

5a. PICU periodic pain assessment Endorsed by NQF

6. PICU medication safety practice adoption Reviewed by NQF; not recom-mended for endorsement

7. PICU central line infection prevention prac-tice adoption

Reviewed by NQF; not recom-mended for endorsement

(continued)


Building on the model using the lens of service area—pediatric critical care: The Joint Commission’s acceptance of the

Pedi-QS framework set the stage for the

collaborative to identify and begin work

on additional priority areas. Pediatric criti-

cal care was selected as the second prior-

ity area as a result of input from workers

in children’s hospitals, the availability of

prospective measures from existing systems

and collaborative efforts, and alignment

with other national initiatives, including

the Joint Commission’s work on develop-

ing an adult critical care measure set. In

addition, the high cost, risk, and com-

plexity of pediatric critical care suggested

that it would be of interest to consumers

and payers as well as pediatric providers.

Building on learning from the development

of the children’s asthma care measure set,

experts were engaged at the outset of the

project through the establishment of a

multidisciplinary expert panel with broad

representation from providers (e.g., free-

standing children’s hospitals, children’s

hospitals within hospitals, diverse geograph-

ic locations) and areas of specific expertise

(e.g., risk adjustment), as well as the Joint

Commission. Using a Joint Commission

best practice for public comment, the Pedi-

QS collaborative developed a Web-based

tool to systematize and simplify data collec-

tion. More than 130 hospitals responded—

more than a fourfold increase as compared

with the response to the children’s asthma

care measure set. The expert panel was

reconvened to make final recommenda-

tions, resulting in a set of seven measures in

less than 14 months. Five of these measures

were recently endorsed by NQF (Table 1).

Expanding the field using the lens of pro-vider type—nursing-sensitive indicators: The third project undertaken by the Pedi-

QS collaborative was the assessment of

Table 1. Measure Review—Version 2 (continued)

Date of Completion Review Process Measure Name Status

Priority Area: Nursing-Sensitive Care

2007 Convened 16 experts, including representa-tives from American Nurses Association, Joint Commission, and National Database for Nursing Quality Indicators (NDNQI)

49 indicators used internally and/or available through vendors resulted from call for measures

219 respondents from 129 hospitals provided input during comment period

1. Nursing care hours per patient day Recommended for further testing

Endorsed by NQF

2. Skill mix Recommended for further testing

Endorsed by NQF

3. Percentage of RNs with BSN or higher Recommended for further testing

4. Percentage of agency/travelers worked Recommended for further testing

5. Unit vacancy Recommended for further testing

6. Voluntary turnover Recommended for further testing

Endorsed by NQF

7. Practice environment scale Recommended for further testing

Endorsed by NQF

8. Use of restraints Recommended for further testing

9. Pediatric pain assessment (on admission and periodically)

Recommended for further testing

10. Central line–associated bloodstream infection


Endorsed by NQF

11. Prevalence of peripheral intravenous infiltrates


12. PICU unplanned endotracheal extubation rate


Note. ED = emergency department; OS = observation status; NQF = National Quality Forum; HQA = Hospital Quality Alliance; PICU =

pediatric intensive care unit; CAC = Children’s Asthma Care.

*For hospitals reporting measures to the Joint Commission


nursing-sensitive indicators for children’s

hospital care. Selection of this priority

area was driven by external forces, includ-

ing the endorsement of an initial set of

consensus standards for nursing-sensitive

care by the NQF. There is growing evi-

dence of a negative association between

nurse staffing and adverse outcomes and

a positive association between nurse staff-

ing and patient experience with care

as well as nurse satisfaction. However,

most of this research has been conducted

in adult settings. Applying the Pedi-QS

methodology with a panel of nursing

experts, including representatives from

the Joint Commission and the American

Nurses Association, 12 nursing quality

indicators (Table 1) were identified as

potential measures. Unlike the first two

measure sets, feedback received during

the national comment period and from

the expert panel suggested that compre-

hensive pilot testing was needed prior to

using the indicators for the purposes of

comparative reporting of hospital perfor-

mance. Therefore, the output of this pro-

cess was a white paper identifying issues to

be addressed through pilot testing.

What Have We Learned?Over the last 5 years of the Pedi-QS experience,

we have encountered barriers and continuously

learned from them. Key barriers to develop-

ing and implementing the collaborative model

included (1) lack of agreement among stake-

holders on the purposes of measures, especially

with regard to what types of measures might

be used for public reporting; (2) challenges in

obtaining broad input and achieving consensus

among numerous stakeholders; (3) the degree

of rigor and resources required to precisely

define and evaluate quality measures; (4) the

lack of robust, validated, and tested measures to

enable populating the full Pedi-QS framework

(i.e., all quality aims for a given service area or

condition); and (5) the slow adoption of the

output of the collaborative by national entities

such as the NQF and HQA. To address the first

three of these challenges, we offer the following

strategies.

the Joint Commission in the pediatric critical

care measure project from the outset avoid-

ed the need for additional expert review and

a duplicative public comment period.

Although quality domains and patient

needs might be emphasized differently

in pediatrics than in adult care, the IOM

quality aims and FACCT patient needs

are as applicable to children as they are

to adults. Adapting existing frameworks

enabled the Pedi-QS Collaborative to

move forward quickly, and speaking the

same language facilitated the interface

with other national efforts.

involvement of experts from multiple dis-

ciplines early in the process enhanced the

meaningfulness as well as the credibility

and acceptance of the output.

consensus measures. It is important to

cast a wide net in seeking stakeholders’

comments on proposed measures. The

limited public input into the initial asth-

ma care set resulted in push-back from

several stakeholders.

Although collaboration can make the

development process slower, we hypoth-

esize that it will speed adoption.

Public policy interventions are needed to

address the last two challenges—the need for

the de novo development of robust, validated,

and tested quality measures and the widespread

adoption of pediatric measures at the national

level. Although the Pedi-QS Collaborative has

completed three substantive projects, movement

of measures into national reporting efforts has

been slow as a result of lack of resources and lack

of a focus on children. The pediatric community

is working to overcome these challenges.

What’s Next?The Pedi-QS Collaborative has demonstrated

early results, which are now ready for broader

application. The Alliance for Pediatric Quality

(the Alliance) was formed in 2006 by the

American Academy of Pediatrics, the American

Board of Pediatrics, CHCA, and NACHRI, build-

ing on the desire of all four organizations to

provide a unified physician and hospital voice

for pediatrics. We believe that this collaboration

is a distinctive competency of pediatrics.

The Alliance has embarked on a multiyear

collaboration to promote meaningful pediatric

improvement and to ensure that health informa-

tion technology works for children. In 2007, the

Alliance convened a national task force of quality


and safety leaders who identified four initial pri-

ority areas for improvement in pediatrics and cat-

alogued improvement initiatives and measures

associated with these priorities (obesity, patient

safety, neonatology, and chronic conditions).

How Has Pedi-QS Contributed to the Field?Accelerating the testing and refining of mea-

sures from improvement initiatives will pro-

vide meaningful measures that can be reviewed

and endorsed by national organizations, inform

consumers, and set expectations for the selec-

tion and improvement of quality healthcare for

children. Consumers will benefit from the avail-

ability of information about quality as they select

healthcare for their children as well as from care

improvements expected to result from compara-

tive reporting. Payers also will benefit from hav-

ing information on children’s healthcare quality.

This benefit is critically important, given that

children accounted for 50% of individuals served

by Medicaid in 2005 (Kaiser Family Foundation,

n.d.). States currently are relying on limited data

for assessing the quality of care provided to chil-

dren. Limitations in data and technology, as well

as the need for better measurement tools and

standards of care, were cited as barriers to quality

measurement and improvement by almost 30%

of state Medicaid and SCHIP directors in the

HMA study (Duchon & Smith, 2006).

Providers will benefit in at least two ways. Through

the development of standardized and meaningful

consensus measure sets, the burden of data collec-

tion will be reduced for providers. More important,

by having comparable information available, provid-

ers can learn how to improve.

ConclusionMarket forces will continue to drive public

reporting and pay-for-performance initiatives,

and there is evidence that these efforts can

provide the impetus for meaningful measurement

if combined with sound quality improvement

approaches. We are making progress, and

pediatrics is increasingly included in national

quality efforts. More than 35 pediatric experts are

now participating in technical advisory panels or

steering committees of NQF projects. However,

if children are to be meaningfully included in

these efforts, it is necessary for the people in the

pediatric healthcare community to continue to

work together to build the evidence for effective

care and meaningful measurement. Crosscutting

areas such as patient safety, care coordination,

efficiency, and equity are important and

promising areas for children’s healthcare quality

measure development.

Meaningful inclusion of children in national

quality initiatives also will require changes in

public policy. The U.S. government has greatly

influenced quality improvement, measurement,

and reporting through its work in developing

measures relevant to the Medicare population.

A similar investment is needed for children.

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Authors’ BiographiesEllen Schwalenstocker, PhD MBA, has been director of child health quality for the National Association of Children’s Hospitals and Related Institutions (NACHRI), Alexandria, VA, since 1997. She serves as NACHRI’s representative to the National Quality Forum.

Hema Bisarya, MHSA RD, is a director in the Solutions Team of Child Health Corporation of America, Shawnee Mission, KS. She joined CHCA in 2004.

Stephen T. Lawless, MD MBA, is the vice president for quality and safety for Nemours, Jacksonville, FL, a professor of pediatrics at Thomas Jefferson University, Philadelphia, PA, and staff pediatric critical care physician in the depart-ment of anesthesiology and critical care medicine at Alfred I. DuPont Hospital for Children, Wilmington, DE.

Lisa Simpson, MB MPH BCh, is a nationally known child health services and policy researcher and is currently the director of the Child Policy Research Center at Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. Formerly, she served as the All Children’s Hospital Endowed Chair in Child Health Policy at the University of South Florida, Tampa, FL, and the deputy director of the Agency for Healthcare Research and Quality, Rockville, MD.

Cheri Throop, MHSA RN RHIT CPHQ, is a consultant with Healthcare Performance Improvement, Norfolk, VA. She was formerly director at Texas Medical Institute of Technology, Austin, TX, and chief quality and safety advisor for Child Health Corporation of America, Shawnee Mission, KS.

Donna Payne, FACHE, is a senior vice president for Child Health Corporation of America, Shawnee Mission, KS. She is a member of the executive committee for the Alliance for Pediatric Quality and a fellow in the American College of Health Care Executives.

For more information on this article, contact Donna Payne at [email protected].

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