|
Items in cart [4] |
Questions? Call 888-624-8373 |
| Copyright © 2009. National Academy of Sciences. All rights reserved. Terms of Use and Privacy Statement |
Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter.
Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.
OCR for page 224
7
Knowing What Is Happening
and What is Needed:
Planning, Evaluation, and Research
The goal of emergency medical services for children (EMS-C) is to
achieve the best possible outcome for all acutely ill and injured children by
rapidly and accurately assessing their medical needs and then providing
access to the appropriate care. Those services have to be effective from
both a medical and a cost perspective to ensure that the available resources
can support the maximum amount of care. The three previous chapters
have identified steps that the committee believes must be taken regarding
education and training, organization and delivery of care, and communica-
tion to ensure that children across the country have access to optimal emer-
gency care. Those steps are, however, only part of what needs to be done.
There is widespread agreement that more and better EMS-C data and
data systems are needed. The information resources that are currently available
are too limited, scattered, and unconnected to support the planning and
evaluation that EMS-C needs. Without a broad and reliable base of infor-
mation, it is hard for anyone emergency care providers, administrators,
parents, policymakers to determine in any systematic way how successful
EMS-C systems are in providing appropriate, timely care or what they ought
to do to improve performance and patient outcomes.
This committee believes that not all children are getting the emergency
care that they need, but that the full extent and nature of the problem is not
known. Assembling descriptive data that will make it possible to answer
basic questions about EMS-C systems, patients, and care and to provide
accountability for EMS-C system functions must, therefore, be a high prior-
ity. In addition, research is needed to establish sound clinical and organiza
224
OCR for page 225
PLANNING, EVALUATION, AND RESEARCH
225
tional principles for the care that children are given and the ways it is
provided. Since routine information gathering appropriate for planning and
evaluation activities often is not sufficient to meet the needs of research
activities, special data collection efforts are needed to add to the knowledge
base for EMS-C.
This chapter addresses issues of the eollect~' analysts' and use of data
for planning and evaluation. It discusses actions recommended by the com-
mittee to improve the quality and comprehensiveness of EMS-C data and
gives special attention to creation of a national uniform data set for EMS-C.
The chapter closes with recommendations for key elements of a broad re-
search agenda in this field.
UNDERSTANDING THE INFORMATION GAP
information gathering for planning and evaluation purposes ideally would
be aimed at EMS-C systems, but the initial step is to compile data on the
particular role that individual system components play in emergency care.
When it is possible to take the next step of linking those data, a much more
comprehensive picture of emergency care will emerge. The following ques-
tions reflect the committee's central concerns:
· What is the structure of the system? Data on the numbers and
characteristics of the facilities, emergency care providers, and services available
in the system establish the context in which a system provides emergency
care.
· Who uses the system? Data on the demographic characteristics of the
patient population such as age, sex, and residence (or location of emer-
gency) are essential for understanding who needs care.)
· For what is the system used? Data on the illnesses and injuries that
bring children into the emergency medical services (EMS) system and on
their condition (e.g., level of consciousness) establish the epidemiology of
. . .
pet latrlc emergencies.
· What services or procedures are provided to a patient? These data
are the basis for describing the process of care in an EMS system.
When are services provided? In the EMS context, time intervals in
various stages of care can be significant elements of the process of care.
· What are the outcomes of using the system? Clinical outcomes based
on functioning, patient well-being, morbidity, and mortality are of interest;
so are process outcomes, such as hospital admission or referral to a tertiary
care facility.
· What are the global costs of the system? Both the direct and indirect
economic costs of operating EMS-C systems, as well as the monetary sav-
ings over time that may be realized by successful expansion of EMS-C and
integration into EMS systems, are of interest.
.
OCR for page 226
226
EMERGENCY MEDICAL SERVICES FOR CHILDREN
With good descriptive data, planners, evaluators, and researchers can
begin to answer the more significant question: How well does the system
perform? Performance can be judged on the basis of outcomes or processes
of care for individual cases and for populations. Clinical outcomes can be
assessed across a broad spectrum (from basic physiologic and biologic mea-
sures through health-related quality of lifer- ideally with severity or acuity
adj-~stn~ents using appropriate tools such as those discussed In Appendix A
at the end of this chapter. Various elements of the process of care such as
appropriateness of triage, timeliness of treatment, or completeness of docu-
mentation can be evaluated. Compliance with structural guidelines, such as
provider qualifications or equipment available, is another evaluation crite-
rion that can be used. Cost-effectiveness must be a consideration as well.
The assumption in evaluating system process and structure is that deficien-
cies in those areas are likely to have an adverse impact on the ultimate
results of the care that children (or adults) receive. Even this assumption
can be tested only when data exist.
The need for more and better data on the volume, nature, and outcomes
of emergency care and the operation of emergency care services has been
widely recognized for many years (NAS/NRC, 1970a, 1978a, 1980; MacKenzie,
1989; Eisenberg et al., 1990; Lescohier et al., 1990; IOM, l991b; Seidel
and Henderson, 1991; CDC, 1992b). Progress in improving data resources
has been limited, however. As was noted in Chapter 2, much of what has
been learned about EMS-C, including the work discussed in this report, is
based on one-time studies or studies in a single institution or community,
which raises problems of external validity and generalizability of the results.
Nevertheless, conclusions and policies are based on these studies simply be-
cause more broadly based information on the structure and operation of
EMS systems, and especially on outcomes of care, is not widely available.
Some individual hospitals, state and local EMS agencies, and emer-
gency dispatch centers that are parts of EMS systems do have sophisticated
data collection and analysis programs that generate valuable information.
EMS systems, however, depend on successful coordination of services from
many separate components; only rarely are these individual components
able to link their data together to learn more about the complete course of a
patient's emergency care. By contrast, trauma registries are able to compile
detailed information on all phases of patient care but only for a small por-
tion of the patient population cared for by EMS systems; they too may lack
certain elements such as linkages with autopsy reports or rehabilitation fa-
cilities. Even comparisons among similar kinds of system components are
difficult because little or no consensus exists on how important concepts are
defined or on what data are needed to operationalize those concepts. Fur-
thermore, data that might already be deemed appropriate are not routinely
compiled or published.
OCR for page 227
PLANNING, EVALUATION, AND RESEARCH
227
Efforts to ensure the best possible outcomes for children are also hin-
dered by limitations in the clinical and health services research base. In
EMS, much research is still needed to understand the clinical merits of
various current practices arid to develop better ways to apply what is known.
Much of the needed research demands specialized data, but some work
might be done with better EMS and EMS-(: data on system structures opera-
t~onal processes, and patient outcomes.
Assessing the costs and cost-effectiveness of erne-rgency care and EMS
systems must be a priority in times of fiscal constraint, but accurate, com-
prehensive, and meaningful data are difficult to obtain. Billing information,
for example, can be obtained from hospitals and insurers, but the charges
assessed for services are not equivalent to the cost of providing that service.
Furthermore, system costs extend far beyond the immediate care of indi-
vidual patients to the overall operation of EMS agencies and hospitals.
With services provided by widely varying combinations of public and pri-
vate sector organizations, ways are needed to aggregate highly diverse forms
of cost data.
Four aspects of this information gap can be singled out for special
emphasis. First, to use a conceptual framework from the health care quality
assurance field, information on "structure, process, and outcomes" for EMS-
C systems is critical.2 Second, ways to use information about EMS to
highlight prevention needs and target related activities efficiently must be
devised. Third, questions about individual components of an EMS system
and about the system as a whole must be addressed. This in turn implies
that information on individual patients must be available across settings and
providers; thus, being able to link records is a significant requisite. Fourth,
EMS-C data are needed at the local, state, and national level; the particular
kinds of data needed at each level may vary, but in all cases, data collected
for one level (e.g., national) should be useful at every level below that (e.g.,
states and localities). These points should be kept in mind in reviewing the
strengths and weaknesses of current data systems discussed later in this
chapter. To answer the questions and fill the information gaps posed above,
three activities must receive attention.
PLANNING, EVALUATION, AND RESEARCH
This committee regarded planning and evaluation as lying at the heart
of effective implementation: planning is required to determine how the
health care system can best meet children's needs for emergency care, and
evaluation is needed to assess how well that care is being delivered. It also
regarded research as essential to validate the clinical merit of care that is
given, to identify better kinds of care, to devise better ways to deliver that
care, and to learn where best to direct prevention activities.
OCR for page 228
228
EMERGENCY MEDICAL SERVICES FOR CHILDREN
This chapter discusses the importance of planning and evaluation with a
particular emphasis on matters related to data and data systems. The com-
mittee is not aiming to address here the details of specific data collection
technologies. Rather, it is looking more broadly at the need to assemble a
core of nationally comparable data on pediatric emergencies and emergency
care and at special concerns about the Chit? reliability' and validity of
Norma derived Mom data collection and analysis efforts; as a part of
this topic, the committee advances ideas for a uniform national EMS-C data
set. It then turns to research, outlining priority issues for a comprehensive
research agenda. The underlying theme is that all three tasks planning,
evaluation, and research require access to data, analytical resources to
transform those data into meaningful information, and ways to use and
disseminate the information to improve the care that children receive.
Planning
Planning is a crucial step and cannot be completely divorced from ei-
tner research or evaluation. Planners need up-to-date descriptive informa-
tion about the current state of affairs (together with a sound idea of where
they want to be in the future) in a number of areas. Among these areas are
epidemiology of injury and illness in the geographic area and population for
which the EMS system is responsible; facilities, agencies, services, and
related equipment and personnel; financial and other resources to support
and maintain those providers and programs; and EMS training and retrain-
ing needs. Planners need information that will help them improve the use
of available resources (hence the link to evaluation), often in fairly short
time frames; taking a longer perspective, they must develop sound argu-
ments to justify requests for increased resources.
Evaluation
Evaluation is concerned with understanding whether value has been
received for the resources expended on an enterprise; more formally, evalu-
ation determines "what outcomes desired and undesired, anticipated and
unanticipated have occurred as a result of a policy or program
i" (IOM,
1990a, p. 91~. This encompasses assessments of quality of care, efficacy
and effectiveness, efficiency, and new program directions and practices.
EMS-C evaluation must address at least three concerns. First, it should
seek to know whether the system is "doing things right": for example,
whether the existing full range of services, from prehospital care through
definitive inpatient and outpatient care through rehabilitation and counsel-
ing, as well as prevention, has been of high quality and whether certain
practices or interventions could be improved. This essentially involves a
OCR for page 229
PLANNING, EVALUATION, AND RESEARCH
229
series of quality-of-care questions (IOM, 1990b): Have all appropriate and
necessary services been provided, and inappropriate and unnecessary ser-
vices not provided? Have the technical and interpersonal aspects of care
been adequate? These questions can be addressed through assessments of
both the process and the outcomes of care, and problems can be tackled
through form al programs of equality assurance and improve-men/.3
A related question is whether the system is *`doing the right things.
This in turn calls for directly assessing the effectiveness Elf not the efficacy)
of services and interventions and using sound practice guidelines, protocols,
and criteria to determine the appropriateness and necessity of care. It also
may involve eliminating unnecessary processes and practices. Effective-
ness must be assessed from a cost standpoint as well as from a clinical one.
Second, evaluation should be concerned with how efficiently services
are being provided. Here questions might focus on whether various opera-
tions dispatch, transport, patient transfer, communications and medical con-
trol, and so forth are functioning optimally, without undue duplication or
wasted effort and without significant gaps or lapses.
A third area of evaluation underscores the link to planning as well as to
the quality and efficiency questions just posed. Specifically, evaluators
need to address systematically a variety of questions about the effects of
changing practice and doing new things. These matters often call for longi-
tudinal analyses. The importance of cross-sectional analyses should not be
lost, however, insofar as regional or facility comparisons need to be made
and differences understood; serial cross-sectional data can show patterns
over time.
Research
Planning and (especially) evaluation clearly overlap with research, but
important distinctions should be noted. Perhaps the most obvious is that
research is often intended to answer relatively specific, detailed, or basic
questions that are separate from day-to-day system operations of a program
or service. EMS-C research questions cover a wide spectrum: for instance,
elucidating biologic factors that contribute to the success or failure of basic
or advanced life support (BLS, ALS) interventions in children, developing
improved injury and illness acuity measures for children, investigating the
etiology and epidemiology of childhood trauma or illnesses that account for
the major part of EMS calls, predicting the emergency care needs of chil-
dren with chronic or disabling illnesses, assessing outcomes of emergency
care over time, or investigating factors that make public education cam-
paigns about safety and healthy lifestyles successful. Thus, compared with
planning and evaluation for EMS and EMS-C system operations, research
asks new and different questions and requires rigorous and specialized study
OCR for page 230
230
EMERGENCY MEDICAL SERVICES FOR CHILDREN
design, data collection, and analysis. Costs must not be overlooked; con-
ducting studies that are clinically and statistically meaningful can be expen-
sive.
For purposes of this chapter, the common thread through these activi-
ties is data and information. EMS-C data are now available from an assort-
ment of sources? but each source provides only a particular type of data;
coord~aticT~ among sources ~s usually minimal. There is also no consis-
tency across EMS systems in whether data on similar activities will be
collected. The next sections briefly review selected sources and limitations
of data related to EMS-C and present several committee recommendations
concerning coding, data collection, and a national uniform data set. The
chapter then considers a research agenda for EMS-C.
UNDERSTANDING CURRENT AND EMERGING SOURCES
OF DATA AND DATA SYSTEMS
Strengths and Weaknesses
In principle, data on emergency medical care for children and the sys-
tems through which it is provided are available from an assortment of sources.
Those different data systems have different advantages and disadvantages,
and in no case can one source provide the full range of information needed
for the planning, evaluation, and research activities discussed earlier.
Prehospital Services
Various approaches are used in collecting information on prehospital
services. Dispatch centers, which are the first point of contact for most
prehospital care, generally maintain information on the nature and timing of
the calls they receive and on the response to those calls. The use of en-
hanced 9-1-1 and computer-assisted dispatch systems provides dispatch ser-
vices with increased data capture capabilities.
EMS agencies often have extensive data collection systems that capture
information about the vehicles and the personnel that respond, patients and
their conditions, treatments used, time intervals in stages of prehospital
care, and where patients are taken for further care. Where they are re-
ported, these data are a resource for assessing patient care and system op-
erations. More than 40 states have developed ambulance reporting forms
(although the information on them is not always forwarded to central or
state offices); 29 states have some form of statewide data gathering system
(chiefly but not exclusively on ambulance runs); a few states more or less
systematically acquire regional or county data, do periodic surveys, or have
statewide data collection programs under development or revision (Emer
OCR for page 231
PLANNING, EVALUATION, AND RESEARCH
231
gency Medical Services, 1992~. Thus, a substantial number of states have
essentially no reporting requirements at all. Local or regional data collec-
tion systems often exist, with or without statewide data collection. Because
there is no widely accepted "standard" EMS data set, it is difficult to inte-
grate data from separate systems. Cutting across all these points are the
questions, often hard to answer? as to whether data are retrievable' reliable,
and -valid.
Hospitals
Emergency Departments EDs are an especially important source of
information about emergency medical care for children. They have the
potential to produce the broadest array of data on emergency care because
many patients receive no prehospital or inpatient services. In addition,
learning more about ED care provided to children who are not seriously ill
or injured is important, in part to understand better the demands on the
EMS system and in part to clarify the barriers to access to primary care that
form a crucial part of the health care reform debate in this country.
National data on ED services will become available for the first time
through the National Hospital Ambulatory Medical Care Survey (NHAMCS),
a new annual survey being conducted by the National Center for Health
Statistics (NCHS) of the Centers for Disease Control and Prevention (CDC),
U.S. Department of Health and Human Services (DHHS). Results for 1992
should be available in late 1993 (although the sample size is too small to
provide estimates for individual states or local areas). Currently, systems
such as the National Electronic Injury Surveillance System (NEISS) and the
Drug Abuse Warning Network collect data only on specific kinds of ED
visits. Without more comprehensive ED reporting, it is difficult to track an
individual, chief complaint, or type of call through the system; to assess
EMS system performance; or to make comparisons among EDs. (Even if
complete ED data were available, those emergency cases in which patients
were admitted immediately on arrival at the hospital would not be identi-
fied.)
The usefulness of ED records depends not only on their accessibility
but also on the adequacy of the clinical information they contain. Com-
pared to prehospital data systems, the content and management of ED records
are rarely addressed in the emergency medicine literature. An unpublished
study conducted for the Wisconsin EMS-C demonstration project (one of
those supported by the Health Resources and Services Administration tHRSA]
in DHHS) found that some hospital information systems that recorded in-
jury cause and ambulance information for ED registration did not include
the information in the electronic medical record (Karlson and Eisenberg,
1990~. The investigators also determined that hospital billing records for
OCR for page 232
232
EMERGENCY MEDICAL SERVICES FOR CHILDREN
ED patients may not include information routinely reported for inpatients
(e.g., discharge status) because that information is not required by third-
party payers. The patient's hospital record usually includes the missing
information, but no systematic use is made of it. The investigators quote
one hospital source to the effect that discharge status "would be 'easy to
capture if there were some use for it"' (KarIson and Fisenl'erg' 1990- p. 10~
Inpatient Services Full inpatient records capture (in principle) more of
the essential clinical information. The current state of paper-based medical
records is quite lamentable, but greater use of computer-based record sys-
tems (IOM, 1991a) will make much of that information more accessible.
Apart from information in the hospital records of individual patients, useful
information may be retrieved through various databases created from sample
surveys and discharge abstract reporting systems. The National Hospital
Discharge Survey (NHDS) of the NCHS, for example, collects information
from a sample of acute care hospitals across the country on patient charac-
teristics, diagnosis, treatment, and disposition at discharge. As was noted
regarding the NHAMCS, the NHDS is not designed to provide state or local
estimates. Thirty states, however, maintain their own discharge data sets;
billing data are the basis of discharge reporting for 23 of these 30 states
(CDC, 1992a).
Discharge data are especially useful in studying injury because the di-
agnostic categories describing the nature of an injury (e.g., head injury,
burn, fracture) are readily identifiable. Six states also require that discharge
reports with injury diagnoses include separate external cause-of-injury codes
(so-called E-codes from the ICD-9-CM tInternational Classification of Dis-
eases, ninth revision, clinical modification]), such as for falls, motor ve-
hicle crashes, and assaults (CDC, 1992a). Adding E-codes to discharge data
enables researchers, policymakers, and others to use the data in planning
and assessing injury prevention efforts. Provisions for reporting E-codes
are also being made in the newly revised standard hospital billing form-
the "UB-92," which should be available for use in 1993 (CDC, 1992a).
Discharge data tend to be more useful in studies of injury than in studies of
illness because reliable methods have not been developed to identify, through
ICD-9-CM diagnostic codes or other means, children hospitalized for emer-
gency treatment of illness.
For all patients, however, mortality reflected in discharge data is lim-
ited to deaths occurring in the hospital. Children who are declared dead
outside the hospital and are not transported to the hospital will not be
included in discharge statistics and analyses a fact that could seriously
distort conclusions and policy actions taken on the basis of such findings.
One study, for instance, determined that 24 percent of pediatric injury deaths
in an urban area were not seen in hospitals (Cooper et al., 1992~. Such
OCR for page 233
PLANNING, EVALUATION, AND RESEARCH
233
deaths must be identified by other means if the aim is to estimate overall
mortality from injury or illness severe enough to require emergency care.
Analysts also must be cautious about using discharge data to estimate the
incidence of injury or illness requiring hospitalization, lest children who are
transferred after admission or who are readmitted for follow-up care be
counted more than once.
Efforts by the loins Commission on Accreditation of Healthcare Organi-
zations (JCAHO) to incorporate ongoing monitoring of hospital performance
into its approach to accreditation is likely to lead to new, targeted data
collection in order to report specific performance indicators (JCAHO, 1987,
1988; Jurkiewicz, 1988; O'Leary, 1991~. Trauma care is one of the areas
for which indicators are now being tested. For example, an indicator of the
appropriateness of airway management of comatose trauma patients is the
proportion of such patients who are discharged from the ED before a me-
chanical airway is established (JCAHO, 19911. A set of data elements
needed to determine performance on the indicators has been identified. How
efficiently and effectively data amassed through this mechanism might be
used in EMS and EMS-C planning, evaluation, or research on a broad scale
remains to be seen.
Trauma Registries
Many hospitals maintain trauma registries that capture detailed infor-
mation on the care and outcomes of patients admitted with traumatic inju-
ries. Where trauma systems have been established, a registry may cover all
the hospitals participating in the system. A few statewide registries also
exist. Unlike many other emergency care data systems, trauma registries
typically include data on prehospital and hospital care.
The CDC advises inclusion of core data elements in seven categories
(Pollock and McClain, 1989~: demographic and identifying data; incident
description; prehospital care; ED care; surgical care; anatomic diagnosis;
and outcome data. Software packages are now available that permit hospi-
tals to manage their registries on personal computers.4
Two long-term efforts have been made to collect data on an even broader
basis to help evaluate trauma care. The Major Trauma Outcome Study
(MTOS) uses data from 139 hospitals to establish broad characteristics of
trauma and to develop national norms for severity-adjusted survival (Cham-
pion et al., 1990b). By 1987, it had demographic, etiologic, severity, and
outcome information on more than 80,000 patients of all ages; of these, just
over 10 percent were pediatric patients. MTOS data have been used to
calculate severity indexes and outcome norms (e.g., for probability of sur-
vival) for adults and for children and to analyze topics such as causes of
injury, death rates, and lengths of hospital stays.
OCR for page 234
234
EMERGENCY MEDICAL SERVICES FOR CHILDREN
The National Pediatric Trauma Registry (NPTR) has focused specifi-
cally on the trauma experience of children (Tepas et al., 1989~. A multi-
institutional shared database designed to compile and evaluate information
on all aspects of pediatric trauma care, it began in 1985. By mid-1992 it
nap co~tectect Information on more than 36,000 children from 61 participat-
ing centers. These data are available to any participating investigator (with
ce-na~n provisos concerning publication). For example, studies on use of
helicopter transport, incidence of discharge disabilities and impairments,
and referral patterns for trauma centers have all been conducted using this
database, and pediatric-specific trauma score norms have been generated.
As valuable as trauma registries are in studying the nature and quality
of trauma care, they capture data on only a limited portion of the children
who suffer serious injury. As with discharge data, information on children
who die outside the hospital is not incorporated into these files. Those
children with traumatic injuries who are cared for in hospitals that do not
maintain a trauma registry or contribute to a trauma system registry are also
missed as are children treated only in the ED. The absence of these cases
from the data set makes comparing outcomes of care in a trauma system
with outcomes in other hospitals impossible. Similarly, investigators can-
not determine from the registry whether the children who were treated out-
side the trauma system were appropriately triaged.
Findings from work based on the data in the two trauma registries
mentioned above have not resolved a key issue in this field namely, whether
pediatric-specific injury or severity scales are necessary or whether mea-
sures for adults (perhaps reweighted or recalibrated in certain ways) will
suffice. The discussion in Appendix 7A also touches on this controversy,
and the material below about data validity reflects a similar debate about
severity-of-illness measures.
Generally, the committee believes that continued support for national or
comprehensive regional databases of these sorts might facilitate progress in
these areas, for instance by fostering the development and validation of
objective outcome assessment measures (for death, disability, and quality-
of-life domains) or the implementation of prospective clinical trials (e.g.,
on different methods for initial resuscitative care). Expansion and refine-
ment of demographic and epidemiologic data sets also may help provide
ongoing statistical support for development and evaluation of regionalized
systems of pediatric trauma care. Ideally, given the comparative lack of
information on childhood illness, such databases might even be expanded to
include pediatric medical emergencies.
, . .. . ~ . ~ ..
Health Insurance Claims and Administrative Data Sets
Claims data are increasingly used in research on variations in the use of
OCR for page 269
PLANNING, EVALUATION, AND RESEARCH
269
leagues (1986) showed, for instance, that the sensitivity and specificity of
the TS (for correctly identifying patients needing or not needing to be trans-
ported to a trauma center) are highly influenced by the specific TS score
selected to indicate "severe" injury. They present data to suggest that the
TS may well identify patients likely to have severe injury, but it may also
have some [~1~-negatives arid miss patients with major thoracic injury; in
addition, problems of undertriage or overtriage may differ depending on
whether the injury reflects penetrating or blunt trauma. Baxt et al. (1989)
determined that the TS, RTS, CRAMS, and Prehospital Index (PHI) could
accurately predict which trauma victims would die but that they could not
accurately pinpoint which patients of those who initially appeared physi-
ologically normal (in the prehospital setting) were in fact victims of major
trauma (i.e., could not distinguish major from minor trauma injury). Kane
et al. (1985) evaluated several existing measures (e.g., the TS) and some
new instruments for triage and concluded that "the most striking finding . . .
is the disappointing performance of all [emphasis in original] the triage
techniques studied" (p. 4881. They question whether methods based on
rigidly defined variables can achieve high sensitivity, high specificity, and
positive predictive validity, and they propose that the reliability of para-
medic observation itself might deserve further exploration.
By contrast, Eichelberger and various colleagues (Eichelberger et al.,
1989b) have developed evidence from a pediatric database (0 to 14 years)
that the TS, PTS, and unweighted RTS have an acceptable sensitivity for
triage decisions (e.g., whether to transport a child to a pediatric trauma
center), although the last-named may have a less acceptable specificity. As
noted above, the PTS has been shown to have good predictive validity when
used for trauma triage in the field, and Tepas (1992) argues that a tool such
as the PTS may have its "greatest applicability in . . . [improving] care for
the rural population" (p. 1769.
Not all experts in the field argue so strenuously for the use of formal
trauma or triage tools. Emerman and colleagues (1991), for example, re-
ported that, in one metropolitan area, EMTs' judgments about overall sever-
ity of trauma and predictions of mortality and need for immediate operative
intervention were as accurate as scores from the triage-revised TS, the PHI,
and CRAMS. (This point would seem to accord with the sentiments ex-
pressed by Kane et al., 1985.) With respect to triage-transport decisions,
Orr and colleagues (1992) comment that the PTS (as well as the GCS and
MISS) "may prove useful for certain categories of patients, such as those
with multiple trauma or necrologic disease" (p. 1573~. Overall, therefore,
the evidence about the application of trauma severity measures in triage
seems to be mixed; relatively poor performance in predicting major trauma
for adults will likely be worse for pediatric patients.
OCR for page 270
270
Mortality Predictors
EMERGENCY MEDICAL SERVICES FOR CHILDREN
Some measures, such as the Pediatric Risk of Mortality (PRISM) score
(Pollack et al., 1988b) and TRISS (Eichelberger et al., 1988b), can help
identify unexpected (i.e., potentially preventable) deaths as well as unsurvivable
injuries (i.e., expected deaths). At least one study, however, suggests that
-trauma scoring systems based on AlS and ISS, when used for pediatric
patients, may overestimate the "non-salvageable" population in that age
group, perhaps because of overemphasis on head injury or limitations of the
original evaluation; some children so designated do survive, and at least
some of those who do have a high probability of good long-term functional
outcomes (Jaimovich et al., 1991~. Generally, the state of the art of mortal-
ity prediction among injured children, which relates directly to ongoing
debates about the adequacy of trauma scoring systems for pediatric patients,
remains in flux.
Questions about mortality measures are pertinent to efforts to evaluate
pediatric trauma programs. One issue centers on whether "preventable death
rate" (PDR, the proportion of all deaths that could have been avoided had
care been optimal) or"effectiveness" (E, the proportion of severely injured
patients who were salvageable and survived, which excludes those who
would be expected to die despite optimal treatment) is the better evaluative
measure. Wesson and colleagues (1988), for instance, have argued that the
PDR is sensitive to case mix which in turn would be sensitive to the
injury severity index used and that E would be a superior way to assess
how well a pediatric trauma program was functioning, but commentary on
the work suggests that the issue is not resolved.
ILLNESS MEASURES
Scoring systems to assess the severity of pediatric illness, particularly
in the prehospital setting for triage purposes, or to predict the outcome from
illness, have proven even more difficult to develop than those available for
trauma. Indeed, the committee recognizes that no reliable or valid illness
severity scores exist that could be universally applicable for illness assess-
ment of all pediatric patients. The following discussion provides a brief
overview of some of the major illness measures presently available, but it is
not all-inclusive. For example, disease-specific scores that are used in
pediatric emergency care, such as for asthma, croup, or meningococcemia,
are not discussed.
As with trauma and injury scores or other physiologic measures that, in
theory at least, reflect illness acuity, most illness severity measures have
been developed and used for adult patients in a general hospital population.
They tend to be "global" measures (in much the same way that trauma or
OCR for page 271
PLANNING, EVALUATION, AND RESEARCH
271
injury can be considered a "global" or "generic" condition), rather than
disease- or condition-specific. Not surprisingly, they may often not be
appropriate for pediatric patients.
Selected Measures
General Illness-Related Measures
Iezzoni (1991) provides a definitive review of measures to standardize
(i.e., adjust for) severity of illness, especially in their role in research,
quality assessment, and health policy work. Among the better known sever-
ity-adjustment tools are the following:
· Acute Physiology and Chronic Health Evaluation (APACHE and APACHE
II) (Knaus et al., 1981, 1985~;
· the Computerized Severity Index (Horn and Horn, 1986; Averill et
al., 1989~;
· the disease staging methodology (Gonnella et al., 1976,1984; SysteMetrics,
1988~;
· MedisGroups (Brewster et al., 1985; Iezzoni and Moskowitz, 1988~;
and
· Patient Management Categories (Young et al., 1982; Young, 1984~.
Measures that are well known for or used for trauma and injury but are
also regarded as applicable to illness include the PHI (Koehler et al., 1986),
the Physiologic Stability Index (PSI) (Yeh et al., 1984), and the Therapeutic
Intervention Scoring System (TISS) (sullen et al., 1974; Yeh et al., 1982~.
Pediatric Measures
Certain pediatric instruments can also reflect both illness and injury
severity. For example, PRISM (Pollack et al., 1988b; Pollack, 1993) is a
simplification of the PSI; one variant (Dynamic Objective Risk Assessment,
or DORA) uses multiple PRISM scores to assess worsening or improving
levels of severity of illness (Ruttimann et al., 1986; Ruttimann and Pollack,
1991~. A pediatric version of the Glasgow Coma Scale has been proposed
(Reilly et al., 1988~.
The Maryland EMS-C Project (1992) developed a preliminary version
of a Pediatric Severity Assessment Tool (PSAT) that is designed to be ap-
propriate for prehospital providers as well as clinicians in community hos-
pital EDs and physicians' offices. Its designers intend that it quickly iden-
tify patients who need various levels of emergency care without having to
resort to much in the way of laboratory data (except perhaps for an electro
OCR for page 272
272
EMERGENCY MEDICAL SERVICES FOR CHILDREN
cardiogram or pulse oximetry reading). The PSAT is still undergoing field
testing.
For children, the greatest success has occurred in formulating measures
that assess mortality risk or the "intensity" of the care needed by the most
critically ill (or injured) children; these include PRISM, PSI, and TISS.
(BuGhert and Yeh. 1992' review some of the prehospital illness scoring
measures.) For severity of zIIness measures, a variety of physiologic and
behavioral indicators respiratory rate, fever, lethargy, irritability contrib-
ute to assessments of severity of illness. Children, especially younger ones,
may not manifest ordinarily well-known signs and symptoms of the ill-
nesses they have, so a measure that would indicate which children require
laboratory evaluation to rule out serious or life-threatening illnesses and
which children have only minor ailments will be useful.
One such measure what has come to be called the Yale Observation
Score was developed by McCarthy et al. (1982) in an attempt to identify
items that could be used to help clinicians recognize, reliably, validly, and
quickly, serious illnesses in children with fever. The model includes six
observation items (quality of cry, reaction to parent stimulation, variation in
awake-asleep status, color, hydration, and response to social overtures),
each scored on an item-specific three-point scale (normal, moderate impair-
ment, severe impairment). One test in the hospital ED setting raises ques-
tions, however, as to whether this scale, even in the hands of experienced
physicians, will provide sufficient information to identify serious febrile
illness in very young infants (Baker et al., 1990~. The "SAVE A CHILD"
triage approach, based on a simple mnemonic (skin, activity, ventilation,
eye contact - abuse - cry heat immune system level of consciousness and
_ _ , _ , , ,
dehydration) is another example of a protocol for EDs intended to provide
markers of possibly serious illness (Wiebe and Rosen, 1991~. The "SAVE"
part of the triage guide involves simple observations, and the "A CHILD"
portion involves observations and simple history questions; in total, it takes
less than one minute to complete, and its developers thus claim that it
would be particularly valuable for busy EDs.
Comment
Generally, it can be said that generic or global measures of acuity or
severity of illness in children lag those for trauma and injury by a consider-
able degree. In view of the evidence presented in Chapter 2 about the
extent to which illness is the reason that children (especially younger chil-
dren) require emergency care, this is a major gap in the tools available to
EMS-C personnel, researchers, and evaluators. In addition, measures other-
wise considered reasonably applicable to the pediatric age group tend to be
unreliable in infants under 2 months.
OCR for page 273
PLANNING, EVALUATION, AND RESEARCH
273
Typically, instruments are developed first for research purposes (which
call for retrospective scoring of the severity of illness), and they may be
quite sophisticated. Those intended for prospective clinical use come later
and may not, at the outset, be as complex, reliable, or valid. Few if any
global illness assessment scores can be used to predict outcomes reliably
across the entire pediatric age span; even among the di$ea$e-specific m.ea-
sures, predictability may not be high.
Far less has been done to try to apply existing measures in any program
evaluation or quality assurance effort. Thus, an appreciable amount of
investigation and validation lies ahead to provide the EMS-C field with
reliable and valid instruments related to illnesses across the pediatric age
range that can be employed in research and evaluation activities. As with
the trauma and injury measures, then, the committee concluded that this
was an area warranting high priority in the research agenda proposed in the
main part of this chapter.
OCR for page 274
274
EMERGENCY MEDICAL SERVICES FOR CHILDREN
Appendix 7B
Emergency Medical Services for Children
Proposed National Uniform Data Elements
As is clear in the main text of Chapter 7, the Institute of Medicine study
committee firmly believes that high priority must be given to collection and
analysis of nationally comparable data at local, state, and national levels on
emergency medical services for children (EMS-C). Data must be obtained
from all phases of care for emergency conditions, including prehospital,
emergency department (ED), intensive care and other inpatient services, and
rehabilitation. The committee recognizes that, for data collection and analysis
to succeed, a wide range of interested parties (e.g., health care providers,
public agencies, hospitals, researchers, and administrators) will need to reach
consensus regarding definitions and formats for specific data to be col-
lected. Substantial work also remains to resolve many administrative and
technical issues, such as determining which federal and state agencies will
have responsibility for assembling and analyzing data or what electronic
format will be used to store the data.
The committee agreed that it was not the appropriate body to resolve
these various issues. Instead, the committee sees its role as having three
parts: to make clear the importance of data collection and analysis in the
further development of EMS-C, to emphasize the need to establish an es-
sential core of data to support important analyses, and to encourage indi-
viduals and institutions to take action. The committee felt very strongly
that getting started on defining a core data set and collecting data was
critical. To that end, it has proposed an initial set of data elements for
EMS-C, which is described in detail in this appendix. These data elements
must be seen as a starting point for a more comprehensive data resource.
In its discussions of these issues, the committee focused particularly on
prehospital and ED care, believing that systematic collection of nationally
comparable EMS-C data should begin with those settings. It then identified
data elements that it believes ought to be part of a national data set. Several
criteria guided the selection of specific elements, including utility of a data
element for national and local analyses, adaptability to changing informa-
tion requirements, ability and willingness of providers to capture accurate
data, and availability of reliable and valid measures. The committee also
considered whether evidence was available that data can be collected and
used successfully without undue cost. Finally, it focused on the utility of
this core data set for planning and evaluation purposes, rather than for
research.
OCR for page 275
PLANNING, EVALUATION, AND RESEARCH
275
The "priority" or "core" data elements are listed below along with com-
ments reflecting the committee's reasons for selecting them or other obser-
vations about the data element. In the case of E-codes, the formal recom-
mendation made in the full report is noted. Also listed are two other categories
of data elements "desirable" and "rejected" that the committee discussed
but chose not to select' and annotations concerning the basis for consider
at~on or rejection (respectively) are also given. General statements agreed
to by the committee regarding the collection of these data are presented just
below.
SPECIAL CONSIDERATIONS
Prehospital and Transport Services
The committee advanced three broad principles to guide collection of
these data in the prehospital setting. First, data should be collected on
every call to which a prehospital provider responds, even if no patient is
transported. Second, data should be collected from each ambulance (or
other EMS unit) that responds to a request for assistance; coding schemes
should be developed to make it possible to link separate reports on the same
event. Third, data should be collected on interfacility transport provided by
ambulance units; data on these transports should be distinguishable from
prehospital transports. (The data elements relevant for interfacility trans-
ports may differ from those presented below for prehospital reporting; the
committee did not attempt to develop a list of data elements specifically for
interfacility transports.)
Emergency Departments
The committee noted that several parameters that are markers for the
physiologic status of the child should be collected routinely in EDs (even if
they are not now so collected); they may then be helpful in comparing
institutions, systems, regions, and states. These measures include the ele-
ments of the Glasgow Coma Scale (GCS) and vital signs. The committee
recognizes that problems exist at present in collecting these data reliably;
for example, clerical personnel who routinely abstract data may not be
familiar with the particular elements (especially of the GCS). A somewhat
similar case is made for collecting certain kinds of zip code information as
part of the prehospital data set. That is, even though such information is
not now routinely collected by EMS agencies, it will be valuable for system
evaluation, planning, and descriptive work, and the committee therefore
advises that these data elements be included in routine data collection.
OCR for page 276
276
EMERGENCY MEDICAL SERVICES FOR CHILDREN
TABLE 7B-1 Data Elements Considered for a National Uniform Data
Set for Emergency Medical Services for Children: Prehospital Services
and Emergency Departments
Prehospital Data Elements
Data Element
Basis ~r Se-lechon, Considerations or Rejection
Priority Data Elements
Date of Birth/Age
Gender (M/F)
Date and Time:
· Call for assistance (or EMS dispatch)
· Arrival on scene
· Departure from scene
· ED arrival
Prehospital Assessment
Spontaneous Breathing (YIN):
· On arrival at scene
· On arrival at hospital
Spontaneous Pulse (YIN):
· On arrival at scene
· On arrival at hospital
Level of Consciousness on Arrival at
Scene (A/V/P/U)
Alert
Response to Voice
Response to Pain
Unresponsive
Disposition:
Left at scene
Transported
Transported to:
Hospital identification number
(Hospital zip code)
Zip Code for Site of EMS Encounter
Relationship of age to number and nature of
emergency events and to outcomes; facilitate
linkage between ED and EMS records; may not
be routine part of current Prehospital data
collection; the committee encourages use of
date of birth, which is a better tool for record
matching.
Distinguish differences in types of emergencies
(and therefore service needs), especially among
adolescents.
Calculate elapsed time in stages of Prehospital
care; travel time can be an indicator of
distances; ED arrival time can facilitate linkage
between EMS and ED records.
Time reporting is often retrospective; need to be
aware of limits on accuracy.
Nature of patient's condition (e.g., injury, illness,
uncertain).
State of breathing and pulse give an indication of
acuity; deterioration or improvement on arrival
at hospital.
Indication of acuity, salvageability; use to assess
destination choices and triage practices.
Distribution of cases by action taken; assess
relationship of acuity to disposition.
Nature of destination ED (community hospital
versus referral center); possible development of
denominator data; facilitate linkage between
EMS and ED records.
A consistent national system; location of
emergency relative to location of initial hospital
care; analysis of transport and triage practices;
location of events for prevention analysis;
possible development of denominator data; can
aid in matching EMS and ED records when
location zip code is also home zip code.
OCR for page 277
PLANNING, EVALUATION, AND RESEARCH
TABLE 7B-1 Continued
277
Prehospital Data Elements continued
Data Element
Basis for Selection, Consideration, or Rejection
Prehospital Services:
· Pros An humor
· Prehospital run report number
Type of Responder (e.g., ALS, BLS)
Desirable Data Elements
Mechanism of Injury
EMS Interventions Used
Rejected Data Elements
Vital Signs
Loss of Consciousness
or
Conscious (Y/N/Uncertain)
Dead on Scene/
Alive on Arrival at ED
Resuscitation Needed
Medical/Surgical/Other
Facilitate linkage between ED and EMS records.
Qualifications of responders.
Good correlation with outcome; already part of
trauma system and much EMS reporting;
valuable for analysis of determinants of injury;
appropriate response categories need to be
defined before inclusion in a national data set.
Appropriate response categories need to be defined
before inclusion in a national data set; may not
be possible to determine appropriateness of
intervention use or nonuse; very important for
local quality assurance/quality improvement
activities.
Not useful for aggregated analysis; may not be
reliably collected in the field.
Replaced as acuity indicator by level of
consciousness on arrival at scene; potential for
uncertainty in determination; requires careful
specification of time of assessment.
Acuity indicator; complications in determination
of death (e.g., state before and after
resuscitation); restrictions on EMT authority
to declare death; significant regional differences
in practices regarding declaration of death.
Acuity indicator; based on judgment rather than
objectively observable or measurable state.
Nature of case; replaced by condition categories
more appropriate for determination by EMS
personnel.
continued
OCR for page 278
278
TABLE 7B-1 Continued
EMERGENCY MEDICAL SERVICES FOR CHILDREN
Hospital Emergency Department Data Elements
Data Element
Priority Data Elements
Date of Birth
Gender (M/F)
Race/Ethnicity
Mode of Transport (e.g., self, EMS,
interfacility, air, ground)
Date and Time of ED Arrival
Date and Time of Discharge
Disposition (e.g., dead on arrival;
died in ED; discharged home;
admitted; transferred)
Diagnostic Codes (allow for reporting
multiple ICD-9-CM nosology [or N]
codes for each patient)
Procedure Codes (allow for reporting
multiple CPT-4 codes for each patient)
External-Cause-of-Injury (E) Codes
(allow for reporting multiple ICD-9-CM
including site of injury)
Glasgow Coma Scale (GCS) Components
Verbal response
~ .
Bye opening
Best motor response
Vital Signs (initial readings)
Pulse
Respiratory rate
Systolic blood pressure
Temperature
Basis for Selection, Consideration, or Rejection
Relationship of age to number and nature of
emergency events and to outcomes; facilitate
linkage between ED and EMS records.
Distinguish differences in types of emergencies
(and therefore service needs), especially among
adolescents.
Assess relationship to incidence and acuity
(implications for access to other care).
Distribution of cases by transport; relationship
between transport and acuity; relationship
between transport and outcome; appropriate
response categories and criteria need to be
established.
Calculate length of time to discharge; facilitate
linkage between ED and EMS records.
Calculate length of time from arrival to discharge;
relationship between time, acuity, and nature of
a~spos~t~on.
Distribution of cases by disposition; assess referral
patterns; indication of acuity; identify cases to
track for need/use of further services.
Distribution of conditions presenting to the ED;
indication of acuity.
Hospitals may not currently be coding diagnoses
and procedures if they do not bill for ED
services; ICD-9-CM coding is often time
consuming and imprecise; alternatives should be
explored.
Indication of acuity; appropriateness of care;
resources and training used; accuracy of coding
may be poor.
Correlation with outcomes; assessing prevention
needs and impact of prevention programs;
committee strongly recommends universal
adoption of E-codes.
Acuity indicator; valuable research tool;
application to children may need further
refinement.
Necessary element for TRISS analysis, so required
for aggregated comparative analyses when
adjustments for differences in patient injury
severity are desirable; also useful for
adjustments for illness severity (TRISS analysis
is based on Revised Trauma Score and Injury
Severity Score).
OCR for page 279
PLANNING, EVALUATION, AND RESEARCH
TABLE 7B-1 Continued
279
Hospital Emergency Department Data Elements continued
Data Element
Basis for Selection, Consideration, or Rejection
IrtsurancelPayer Codes (e g^' self-pay,
Med~caid,-publ~e assistance,
CHAMPUS, private insurance)
Prehospital services:
· Provider identification number
· Run report number
Hospital Identification Number
Hospital Zip Code
Home Zip Code/Country
Desirable Data Elements
Date and Time of Physician Encounter
Date and Time of Disposition
Usual Source of Care (e.g., yes, no,
not known)
Communication Barriers Between
Provider and Patient (or Family)
Prior Health Status
Rejected Data Elements
Loss of Consciousness (history
at time of arrival)
Clarify impact A insurance status on ED a~ EMS
use (actual and perceived costs; relationship to
acuity, diagnosis, transfer, access to other care).
Facilitate linkage between ED and EMS records.
Characterize level of care available from ED
(community hospital versus referral center);
facilitate linkage between ED and EMS records.
Assess area resources through other sources of
data; possible development of denominator data.
Facilitate other analyses: correlate area resources
for family of patient; describe population
characteristics of area; possible development of
denominator data; relation of residence to
location of initial emergency care; referral
patterns; regional concerns regarding use of
services by residents of other areas (counties,
states, countries).
Assess timeliness of care or transfer to more
appropriate level of care in relation to acuity.
Identify procedural delays between ED assessment
or treatment and discharge or transfer to most
appropriate care.
Indicate access to routine care (i.e., a medical
home); timing and acuity of visits when source
of routine care is available; needs further study
before being added to the recommended data
elements.
Clarify relationship with acuity, outcome;
appropriate indicators need to be determined.
Identify children with chronic illness or other
special health care needs; appropriate indicators
need to be determined.
Acuity indicator; replaced by diagnostic and
procedure codes.
Representative terms from entire chapter:
data elements
