Ped Functional Outcome Measures

Pediatric Rehabilitation 1047-9651/91 $0.00 + .
20
Pediatric Functional
Outcome Measures
Stephen M. Haley, PhD, PT,*

Wendy]. Coster, PhD, OTRIL,t
and Larry H. Ludlow, PhD+
OVERVIEW
Leaders in many disciplines involved in pediatric rehabilitation

have stressed the importance of functional outcome measures in clini-
cal practice. The development and use of outcome measures are the
pivotal links that allow practitioners to examine the purposes, effec-
tiveness, and justifications for rehabilitation. 31 In reviewing priorities
for research in rehabilitation of the disabled child, Melvin 66 has indi-
cated that the most important priority for research was the develop-
ment of functional outcome measures that could be used to identify
change related to a rehabilitation program. In a recent consensus con-
ference held in the field of physical therapy, Harris 43 concluded that
"if we are truly concerned with the overall well-being of the child and
family, we must rise to these challenges and join with our colleagues
by assessing and enhancing family-focused and functional outcomes
for children." Consistent attention to functional assessment helps en-
sure that treatment programs focus on meaningful issues that are most
likely to maximize the quality of life for the child and family.
*Assistant Professor, Tufts University School of Medicine; and Director of Research,

Research and Training Center in Rehabilitation and Childhood Trauma, New Eng-
land Medical Center Hospitals, Boston, Massachusetts
t Assistant Professor, Department of Occupational Therapy, Sargent College of Allied
Health Professions, Boston University, Boston, Massachusetts
:j: Associate Professor, Educational Research, Measurement and Evaluation Program,
School of Education, Boston College, Chestnut Hill, Massachusetts
This article was supported in part by grants Hl33B80009 and Hl33G80043 from the
National Institute on Disability and Rehabilitation Research, US Department of
Education .
Physical Medicine and Rehabilitation Clinics of North America- Vol. 2, No. 4, November 1991 689
690 STEPHEN M. HALEY ET AL.
This article reviews principles and methods for assessing func-

tional abilities in children. Conceptual issues related to pediatric func-
tional assessment are discussed and the purposes for functional as-
sessment are described. Major methodologic issues regarding
measurement of function in children are outlined, emphasizing the
importance of considering these factors in instrument selection. A brief
review of currently available pediatric functional assessment instru-
ments is provided, along with brief commentary on their respective
technical and clinical characteristics. Recent advances in measure-
ment technology and test construction that will improve the descrip-
tion of functional status and change in children are discussed. Finally,
recommendations are made for the future direction of functional out-
come measurement development and the use of functional measures
in treatme nt planning, clinical docume ntation, and health services
research.
DEFINITIONS AND TERMINOLOGY RELATED TO

PEDIATRIC FUNCTIONAL ASSESSMENT
Definition of Function
Surprising similarities exist across many diverse disciplines re-
garding the general definition of functional skills in the daily lives of
children. Functional skills are viewed as essential activities required
in the child's natural environments of home and school. 13 Many essen-
tial activities of daily life are common to all children, such as commu-
nication, personal care, ambulation, transfers, and manipulation. Other
functional activities may be more individual and support the needs
and desires of the child, such as play activities and type of social
interaction. The successful integration of the child with disabling con-
ditions into the home and school environment often depends upon the
child's ability to perform essential functional activities independently
in a safe and timely manner.
The assessment of the child's functional skills has a different focus
than most other clinical measures used in pediatrics. The individual
child in the context of the environment is the unit of analysis rather
than a particular component ability. A measure of functional indepen-
dence is a direct measure of the impact of physical and cognitive
deficits on the child's life. Children's functional abilities are viewed as
"moving targets" that expand and become increasingly complex as
children develop and mature.76 Furthermore, functional performance
following rehabilitation may depend highly upon the type of setting to
which the child returns and the availability and extent of family re-
sources.19· 21
The most widely accepted definition of function in the rehabilita-
tion literature is the one provided by the World Health Organization
(WH0). 99 In this framework, function is tied to the concept of disabil-
ity and is concerned with the restriction of compound, integrated
PEDIATRIC FUNCTIONAL OUTCOME MEASURES 691
activities of daily living. 97 By definition,functional outcome measures

appraise "any restriction or lack of ability to perform an everyday
activity in a manner or within the range considered normal for the
person of the same age, culture and education." 99
The strength of the above definition of function is related to its
reliance on a conceptual hierarchy of outcomes as defined by the
International Classification of Impairments, Disabilities and Handi-
caps (ICIDH). 99 Impairment is a limitation or abnormality in ana-
tomic, physiologic, or psychological processes. Disability is a deficit in
the performance of integrated daily activities.Handicap is defined as a
deficit in expected social roles of the child, leading to a deterioration in
the quality of life for the child. Thus, within a disability framework,
function is the ability of the child to perform daily activities indepen-
dently and safely within the environment. In this article, we embrace
the WHO definition of function as a basis for identifying and reviewing
pediatric functional outcome measures.
As an example of an application of the WHO framework, Haley
and Baryza39 recently presented a hierarchical model of motor out-
come measures for infants and young children. An adaptation of this
model is summarized in Figure 1. Motor impairments are regarded as
component processes and performance variables that are measured out
of the context of daily activities and demands. Motor impairments are
defined as self-initiated movements (e.g., spontaneous movements,
motivation to move), prefunctional motor determinants (e.g., flexibil-
ity, strength, postural responses), motor control (e.g., control of muscle
synergies, timing of muscle activation), and motor performance vari-
ables (e.g., speed, agility, visual-motor processes). Motor function
items, however, are considered sets of complex, multistep activities
directly related to the environmental demands placed on the child.
Examples of motor function items include body transport (walking,
running), transfers (e.g., chair, toilet, car), body movements (e.g., lift-
ing, reaching, stooping), and self-care skills (e.g., dressing, eating,
FUNCTIONAL DOMAIN
Motor
performance
•
Transitions School
attendance
Motor control Transfers
Social
Pre-functional Body activities
determinants movements
Transport Mobility
Self-initiated
movements Self-care Endurance
IMPAIRMENTS DISABILITY HANDICAP

(Performance (Activites) (Social Roles)
Components)
Figure l. Example of impairment, disability, and handicap hierarchy applied to
physical-motor outcomes.
grooming). The handicap domain encompasses the ability to be active

and to participate in socially acceptable and desirable roles. Measure-
ment of physical handicap of the child may include such parameters as
endurance, physical mobility (e.g., restrictions in use of school or
public transportation), participation in social activities, and school
attendance.
The terms activities of daily living (ADLs) and self-care skills are
closely related to the concept of functional activities and performance
and are often used interchangeably. ADLs are defined as any activity
necessary to satisfy the needs and effectiveness oflife. 65 Self-care tasks
are defined as those daily and routine activities necessary for living. 19
AD Ls and self-care skills are often divided into basic and instrumental
(advanced) skills. 58 Basic ADLs generally include self-care skills such
as feeding, dressing, and hygiene and are usually considered an inte-
gral part of functional activities that are relevant for pediatric func-
tional outcome measures. Advanced ADLs include higher level tasks
such as meal preparation, money management, housekeeping, shop-
ping, laundry, use of the telephone, and social and vocational skills.
These instrumental activities are sampled only on scales intended for
older children and adolescents. Although medical rehabilitation often
is more focused on physical and self-care function, functional status
incorporates four distinct categories: physical, mental, emotional, and
social. 49
Tests that assess adaptive behavior emphasize the ability of chil-
dren to function independently and meet social demands of the envi-
ronment.13· 82 Adaptive behavior tests have a strong tradition in the
disciplines of special education and psychology. The content of many
adaptive tests closely parallels instrumental ADL scales and tends to
include items at the levels of both disability and handicap. The content
of adaptive behavior scales varies but often includes domains such
as physical development, language development, academic compe-
tencies, domestic skills, leisure activities, vocational skills, commu-
nication abilities, and community living skills.
Developmental Versus Functional Assessment
Standardized developmental milestone inventories are common
outcome measures in rehabilitation programs for infants and young
children with disabilities. The limitations of developmental tests for
use with children with severe handicaps have been widely discussed
and include factors such as lack of standardization on disabled chil-
dren, inadequate sampling of functional and adaptive content, and
poor sensitivity to functional change. 3· 33· 41 · 85 Two main conceptual
advantages can be cited for the use of functional outcome measures
over traditional developmental tests: (1) Functional measures are more
likely to be consistent with rehabilitation treatment goals, and
(2) functional outcome measures emphasize independence, not nor-
mality.
Assessment instruments selected to measure relevant improve-
ments in functional performance should sample items that focus upon
functionally related developmental activities. 18 Education and reha-

bilitation goals for children with severe disabilities are most often
focused on the performance of important daily activities and the neces-
sary reduction of caregiver assistance. 8 · 41 Thus, from a functional
perspective, the assessment of independent ambulation in multiple
contexts is much more pertinent to the goals and environmental de-
mands of the child with physical impairments than hopping or jumping
from an 8-inch platform.
Functional outcome measures emphasize performance of activi-
ties and are less concerned with the form of the behavior. For example,
functional assessment approaches place emphasis on functional motor
independence rather than normal motor function. 44 • 84 Gaining inde-
pendence in the use of special equipment and reducing the require-
ment of physical assistance for mobility may be a direct goal of pro-
gramming and instruction. The use of functional outcome measures
appropriately underscores the importance of the end function rather
than the form or quality of the activity.
Functional Capability Versus Performance
The distinction between capability and performance is a critical
issue for understanding data generated from a functional outcome
measure. 31 Capability refers to the performance of tasks in either a
standardized or an ideal situation. It provides knowledge concerning
the child's best performance . Performance evaluation refers to the
measurement of functional behaviors as they actually occur in the
environment. For instance, a child may have the capability of putting
on a shirt and pants but, because of time constraints in the morning,
may never actually do it without assistance from the mother. This is a
particularly relevant issue when capability is rated as high in one
setting (e.g., hospital), but performance is much less independent in
another setting (e.g., home) . Frey29 indicates that both capability and
performance information are helpful to determine and understand
increments of progress due to rehabilitation programs. Performance
measures tend to be much more sensitive to environmental artifacts
and differences in settings than measures that sample capability. 91
At any given capability level, specific environmental factors may
have a profound impact on the actual functional performance. Because
many standardized instruments do not take into account environmen-
tal conditions, are limited in scope, and assess only one aspect of
performance, many evaluations in the areas of child psychology and
special education are now incorporating judgments of actual child
performance. Judgment-based assessments rely on the perceptions of
professionals or parents to record important clinical behaviors and
performance. 28 Ratings of child performance from parents, teachers,
and therapists provide an opportunity to examine the similarities and
differences in functional performance across settings, environmental
variables, and different raters of performance . Such a focus on environ-
mental and contextual factors that support or detract from positive
changes in functional performance can provide valuable information
for effective rehabilitation planning and intervention. A limited num-

ber of the self-care, adaptive, and functional outcome measures used in
pediatric rehabilitation have adopted data-collection strategies consis-
tent with this judgment-based framework.
Outcome Measures, Measurement, and Assessment
For the purposes of this article, outcome measures are defined as
specific instruments designed to measure functional capability and
performance in children. Outcome measures provide specific means of
organizing and collecting information acquired during an assessment
of the child. Specific outcome measures incorporate a measurement
process in which numbers are assigned in a designated way to the
observations made. Thus, the term measurement refers to the process
of collecting data and assigning numbers to describe children's perfor-
mance. This process of collecting information on functional achieve-
ments and transforming it into data for a measurement system is a
critical step in the description of functional performance. 100 However,
researchers and clinicians in rehabilitation medicine have not always
appreciated the importance of developing valid measurement systems
for functional outcome measures. 68 Exciting and promising applica-
tions of scale development and measurement strategies for pediatric
functional outcome measures are discussed below.
Assessment is the process of using multiple methods of gathering
and organizing information that are important for specific clinical deci-
sions.29 Assessment is the art of selecting and organizing the vast
number of potential outcome measures into a meaningful set of clinical
variables. Functional assessment is the use of one or more outcome
measures to make some decision regarding the functional performance
of the child. A comprehensive functional assessment not only includes
specific standardized outcome measures but also may involve inter-
views and a series of clinical procedures in order to gain a thorough
knowledge of functional status. Christiansen and colleagues 19 provide
a model in which physical abilities, perceptual-cognitive skills,
psychological variables, child and family needs, the social and physi-
cal environment, and social and cultural values are considered in the
functional assessment process.
The specific aims of this article are to identify the pediatric out-
come measures that can be used as part of a comprehensive functional
assessment of the disabled child and to discuss conceptual, measure-
ment, and clinical properties of these outcome measures.
PURPOSES AND USE OF PEDIATRIC FUNCTIONAL

OUTCOME MEASURES
One of the most important elements in selecting a pediatric func-

tional outcome measure for clinical use is to determine its intended
purpose. The content and methods of outcome measures should reflect
and support this stated purpose. 77 It is important to recognize that
content and scaling requirements of functional outcome measures cre-

ated for different purposes are different; thus, a clear understanding of
the purpose of an outcome measure is essential to identify its appro-
priate use. Kirshner and Guyatt53 have provided a logical framework to
identify the purpose(s) of an outcome measure and to determine if data
support these uses . The major clinical purposes for pediatric functional
outcome measures summarized in this article are (1) predictive,
(2) discriminative, (3) descriptive, (4) evaluative, (5) program evalu-
ation and quality assurance, and (6) reimbursement and policy issues .
Predictive
Instruments that have a predictive function are used to classify
children into predefined categories of interest based on previously
collected data.53 For example, functional outcome measures may be
used to identify which children are at risk for future functional deficits,
who will improve with rehabilitation services, 29 or who will need
additional assessment in order to determine if services are necessary. 49
These screening measures are often brief and administered prior to
longer and more comprehensive outcome instruments . Measures fo-
cused on prediction should have data to support the degree of correct
classification or prediction . For example, functional assessment may
be linked in the future to prospective payment systems or to the devel-
opment of admission criteria for rehabilitation services. 29
Discriminative
Functional outcome measures designed as discriminative instru-
ments emphasize the ability to distinguish between individuals or
groups .53 The intent of a discriminative instrument is to compare an
individual or group to an appropriate standard. Such measures can
provide a description of functional strengths and weaknesses that can
be outlined across major content domains. Discriminative tools can
lead to the identification of children who are not functioning within
age-appropriate or performance-based expectations . Comparisons are
usually made to an appropriate normative group or to a comparison
group of children with similar diagnoses. The comparison of a child to
a reference group can provide the basis for diagnosis, placement, iden-
tification of delay, or determination of the level of dependence . One of
the major limitations in the area of functional outcome measures is the
paucity of tests that are appropriately norm-referenced or referenced to
a group of children with handicaps. 16 This lack of normative or compar-
ative test standardization detracts from the ability to make accurate and
valid comparative decisions on the basis of functional outcome mea-
sures .
Descriptive
Descriptive tests involve the collection of information to under-
stand current functional status .49 Descriptive data on functional status
are important for clinical decision making, providing an information
base for setting functionally oriented treatment goals, the identifica-
tion of an appropriate treatment plan, and assisting in individual deci-

sions concerning admission and discharge. 2 9 • 38 An instrument used for
client description is focused on the identification of functional abilities
and limitations. This description also helps provide a framework for
communication across disciplines and parental understanding of a
child's current functional performance. Descriptive instruments used
for treatment planning may need to be sufficiently detailed in order to
determine limiting factors in functional performance .52• 54 Descriptive
instruments help establish rehabilitation needs so that intervention
programs can be closely linked to functional assessment. 67
An example of a functional outcome measure used for a descrip-
tive purpose is given in Figures 2 and 3. Functional data on a child at 3
years of age are depicted using an item profile analysis of the Pediatric
Evaluation of Disability Inventory (PEDI).40 Strengths and limitation
of the functional abilities of the child are readily apparent in such a
profile. Descriptive information on functional performance may assist
the rehabilitation team to establish priorities for a responsive and
effective rehabilitation program. The organization of functional infor-
mation using a standardized approach helps the multidisciplinary
team communicate about the child's status and helps establish a frame-
work for discussion of the appropriateness and design of treatment
plans.
Evaluative
An evaluative functional outcome measure is able to detect longi-
tudinal clinical change in the functional performance of individuals or
groups. Changes in the functional status of children with disabilities
may be subtle. Measures of functional status that are the most sensitive
and responsive to important clinical changes should be used in evalu-
ation studies . Measurement dimensions need to have sufficient grada-
tions in order to register change, 53 and outcome measures must in-
clude parameters that are likely to be the object of rehabilitative
intervention. Evaluative instruments may be used for determining
treatment benefit in clinical trials and for examining the amount of
functional gain in relation to intensity of services or cost of treatment.
Rosenbaum and colleagues 77 present a comprehensive model for em-
pirically establishing responsivity of a functional outcome measure.
Program Evaluation/Quality Assurance
An increasingly important use of outcome measures in pediatric
rehabilitation is in program evaluation and quality assurance systems.
Program evaluation judges the merits of rehabilitation programs and
provides data on the comprehensiveness, effectiveness, and efficacy of
patient services. 67 Outcome measures play a pivotal role in the ability
of pediatric rehabilitation services to plan programs, make compari-
sons between patient goals and program outcomes, and provide ac-
countability and justification for the program. 29 · 34 Program goals must
be clearly defined, and outcome measures should match the intended
goals of the program. Outcome measures also play an essential role in
quality assurance systems designed to review program inputs,

processes, and outcomes .7 • 67
Reimbursement and Policy Issues
Systematic and uniform use of outcome measures enables health
service researchers to address important questions related to service
provision and outcome in pediatric rehabilitation. 11 Substantial re-
search issues that may be addressed with functional outcome measures
are the organization, provision, effectiveness, and financing of pediat-
ric rehabilitation in acute inpatient programs, post-acute inpatient pro-
grams, and educational and community settings. Policy-oriented dis-
ability studies require sound outcome measures to help establish
appropriate eligibility criteria for social and insurance programs serv-
ing children with disabilities.9 1 At the level of the individual child,
functional outcome measures assist in objectively documenting treat-
ment outcomes, providing a basis for making accurate projections for
treatment outcomes in the future, and obtaining full reimbursement for
treatment provided.
CONCEPTUAL AND METHODOLOGIC ISSUES
CONCEPTUAL FRAMEWORKS
A number of conceptual frameworks are important to consider

when discussing the complex nature of pediatric functional as-
sessment. References to theory or conceptual frameworks are not
always ap:fiarent in the development or use of functional outcome
measures. 1 Not only are outcome measures more consistent and con-
ceptually clearer when driven by theoretical constructs, but the inter-
pretation of the results of outcome studies can also be more straightfor-
ward. Although many of the conceptual approaches that have been
applied to adult functional assessment are also relevant for children,
they need to be expanded and elaborated to fit within a developmental
and ecologic framework. The following section is intended to place
into perspective the current viewpoints of disablement theory with
specific developmental and ecologic perspectives.
Disablement Framework
The ICIDH 99 provides an important conceptual foundation for
understanding the consequences of disease and the resulting effects
on health status, disability, and normal life roles of children. This
hierarchical model also provides a workable categorization system for
pediatric outcome measures . Further, it provides a framework for in-
vestigating how the levels of disablement (disease, impairment, dis-
ability, and handicap) may or may not directly affect each other.
Concern has been expressed by a number of authors about the
limitations of this framework for the understanding of the rehabilita-
tion process and its outcomes. It is argued that the complexity of
(Text continued on page 702)
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'°00
Name._ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ __
Chronological Age _ _ _ _ Interview/lest d a t e - - - - - - -
Functional Skills / Behaviors

Self-Care • =3yr.
High Ability
5
4
Low
Ability
Mobility
High Ability
.-~~.--~~-.-~~-,-~~--,-~~--,,-~~.-~~.--~~---.-~~-,-~~--,-~~~.-~~~~~~
5
4
3
2
Low Dowstairs
Ability
Social Function
5
4
Low Household! Self-

Ability Chores Protection
Figure 2. Example of item profile of functional skills of a 3-year-old child, using the PEDI. (Single form divided to fit page. From Haley SM,
Baryza MJ: A hierarchy of motor outcome assessment: Self-initiated movements through adaptive motor function. Infants and Young Children 3: 1,
1990: with permission.)
O'l
(,o
(,o
~ Name Chronological Age _ _ _ _ Interview/test date _ _ _ _ _ __
0
Caregiver Assistance I Modifications
Self-Care • =3yr.
5 Independent
4 Supervision/Setup
3 Minimal Assistance
2 Moderate As~stance
1 Maximal Assistance
OTotal Assistance
3 Extensive
2 Rehab Equipment
1 Non-specialized
0 No Modifi=tions
Mobility
5 Independent
4 Supervision/Setup
2 Moderate Assistance
0 ·Total Assistance
3 Extensive
2 Rehab Equipment
1 Non-specialized
0 No Modifications
Social Function
5 Independent
4 Supervision/Setup
2 Moderate Assistance
0 Totol Assistance
3 Extensive
2 Rehab Equipment
1 Non·specialized
0 No Modifications
Figure 3. Example of item profile of caregiver assistance and modifications of a 3-year-old child, using the PEDI. (Single form divided to fit page.
From Haley SM, Baryza MJ: A hierarchy of motor outcome assessment: Self-initiated movements through adaptive motor function. Infants and Young
Children 3:1, 1990; with permission.)
-1
0
~
interactions between rehabilitation outcomes and personal, experien-

tial, and environmental variables has not been adequately addressed
in this model. 29• 3 1 Also, the model was developed primarily for per-
sons with physical disabilities and may not be as useful for considering
the broad range of cognitive and psychosocial problems that may be
associated with physical dysfunction. 23 Proponents of a psychosocial
model of rehabilitation stress the critical importance of the environ-
ment in the determination of outcomes. 2 The environment and the role
of family and the social support system are likely to play even greater
roles in the outcomes of children than of adults. Theories of dis-
ablement and resulting functional outcome measures for children must
incorporate elements of developmental, environmental, and contex-
tual theoretical frameworks.
Developmental Framework
One of the requirements for a pediatric, as compared to an adult,
functional outcome measure is that it must take into account the devel-
opmental pattern and timetable for acquisition of competencies. 19• 59
That is, it must be grounded in what is known about the order and
timing of appearance, as well as qualitative and quantitative changes
in different performance skills. An adult rehabilitation patient can
generally be assumed to have been independent in major functional
areas prior to onset of the disability. Thus, current loss of function can
appropriately be measured against the standard of independence, and
reattainment of independence is a reasonable goal. However, this
assumption does not hold for children. Whether the child's disability
was present at birth or followed an acute episode of illness or injury, it
must be seen as affecting functional skills not yet perfected or perhaps
even just emerging. The standard against which the child is assessed
must be what is typically seen at that age, and the process whereby he
or she accomplishes that task must be evaluated against the process
typical for that age.
Although there has been considerable study of the unfolding of
the developmental process in normal children, there is much less
information available on the typical patterns of development in chil-
dren with disabilities. Furthermore, much of the study of development
has focused on describing the emergence and elaboration of com-
ponent skills such as language, memory, ambulation, or grasp patterns
rather than the process of acquiring functional competencies. How-
ever, the appearance of a new capacity in a component skill does not
necessarily indicate that the ability to use that capacity effectively is
also present. Particularly for children with disabilities, function may
need to be achieved using alternate combinations of components and
thus may follow a different timetable that reflects this alternate path-
way. There is an acute need for developmental studies of both normal
and disabled children that are sensitive to these issues and that can
provide a firmer foundation on which pediatric functional outcome
measures can be built.
Environmental and Social Context Framework

Recent developmental theory has called attention to how the so-
cial context in which a child finds himself or herself critically affects
behavior on a wide range of measures. 75 This shift in focus follows a
rather long period in which studies have tended to treat skills as
something "inside" the child: The child is said to "have" sitting bal-
ance or to "be" toilet-trained. This view implies that skills manifest in
the situation under study generalize readily to other situations, includ-
ing those that offer different degrees of postural support, less familiar
surroundings, or other competing demands. This kind of framework
leads to an emphasis on measuring what the child can typically do with
a minimum of supports . This "independent" performance is then as-
sumed to be the most accurate reflection of the child's "true" com-
petence.
This assumption is now being challenged by those studying
young children's ordinary activities in their natural context. 26 •48 •94
This work points out that in almost all of the child's daily activities
there is a more experienced member of the culture present who (di-
rectly or in more subtle ways) articulates or clarifies goals, arranges
the environment to match the child's emerging capacities, and pro-
vides sensitive assistance to help the child master the desired prac-
tices. Joint management of functional tasks by adult and child is the
normative pattern for a long period. Development of functional com-
petence is marked by a gradual shift in this type and degree of contri-
bution by the adult guide as the child shows himself or herself in-
creasingly able to initiate, monitor, and adjust the performance on his
or her own. 74 •98
Longitudinal studies consistently support the importance
of viewing the child's development in a transactional framework,
emphasizing the interdependence among different domains of func-
tion and between the child and his or her environment in accomplish-
ing the daily tasks of living. 81 • 96 Thus, the contextual framework em-
phasizes that the child's performance is embedded in a rich social
context, and its essence cannot be captured without also considering
this context. This view argues that if we are interested in measuring
changes that occur during the learning phases of the rehabilitation
process, our functional outcome measures must have some way of
recognizing the participation of other people in facilitating this pro-
cess.
Figure 4 summarizes the components in conceptualizing the mea-
surement of functional performance in children. Children bring with
them their own experiences and their own timing of developmental
competencies. In addition, children with disabilities have a range of
impairments which affects capabilities in specific functional activities.
Environmental variables have a profound effect upon eventual func-
tional performance and must be considered a potentially important
influence on final outcomes .
CHILD ENVIRONMENT
Development Setting
level Task
Experiences T conditions
Social
support
Impairments Child's Modifications Child's
Functional Functional
Capacity Performance
Figure 4. Conceptual model of pediatric disability: factors affecting functional capa-
bility and performance in children.
CONTENT DOMAIN
Content of a pediatric functional outcome measure depends upon

the concertual framework of the instrument, comprehensiveness, and
purpose. 5 Content of a test also depends upon how one views the
importance of measuring capability, performance, or both. 14 Using the
perspective of disability as including limitations in activities within
the child's daily life and expanding upon the components of disability
in the ICIDH, we have defined basic elements of a pediatric functional
outcome measure. Table 1 lists these content areas for the domains of
self-care, mobility, and social function. This list has been strongly
influenced by our own work in the development of the PEDI40 and
reflects some of our biases as to the structure of a minimum set of items
to be included in a pediatric disability scale. We do not propose this as
an exhaustive list, and readers may find it to be more applicable for
younger children than adolescents. We have found that functional
content may vary considerably with the context and environment in
which function is measured. Table 2 provides examples of possible
content variations for hospital, home, and school environme nts.
Self-Care
Decisions about the content to be sampled in the self-care area
need to reflect the developmental age of the children to be assessed as
well as the functional context of major concern. For example, evaluat-
ing the infant's ability to manage clothing fasteners would have little
meaning, whereas the same assessment would be seen as valuable for a
school-age child. Similarly, bathing usually is not a functional area of
concern in deciding educational placement but is important for as-
sessing the burden of care for the parent at home. The self-care content
areas identified in Table 1 represent those most commonly tapped by
pediatric functional outcome measures and identified by the WHO
framework. 99
Table 1. Summary of Majar Con tent Elements for Pediatric Functional

Outcome Measures
COMMUNICATION AND
SELF-CARE MOBILITY SOCIAL FUNCTION
Eating Bed mobility Expression

Dressing Bed transfer Comprehension
Bathing Toilet transfer Problem-solving
Grooming Use of tub, shower Safety
Toileting Floor transfer Play
Bowel and Car transfer Household chores
bladder management Chair transfer Community activities
Manual function Developmental positions Self-information
Developmental transitions Self-orientation
(e.g., sitting to creeping)
Sitting (floor and chair)
Body transport (floor)
Indoor ambulation
Stairs
Wheelchair propulsion
Outdoor ambulation
Running
Body movement
(crouching, stooping)
Climbing
Carrying/manipulation
during ambulation
Table 2. Context Emphasis for Selected Functional Skills

FUNCTIONAL SKILL CONTEXT CONTENT EMPHASIS
Eating Hospital Ability to bring food to mouth,

handle food textures
Home Proper use of utensils, drinking from
cup; obtaining food from serving
dishes
School Management of containers, cartons,
food textures
Bathing/ grooming Hospital Assist with washing/bathing;
toothbrushing
Home Bathing/drying; obtaining soap and
towel; hair grooming,
toothbrushing
School Washing hands and face, nose care
Dressing Hospital Undergarments, shirts, pants, shoes
Home Indoor garments and outdoor
garments
School Outdoor garments, sweaters
Toilet skills Hospital Use of bedpan, urinal, or bathroom
Home Informing parent in time to assist;
hygiene
School Informing teacher before accidents;
hygiene
(continued)
Table 2. Context Emphasis for Selected Functional Skills (continued).

FUNCTIONAL SKILL CONTEXT CONTENT EMPHASIS
Transfers Hospital Bed mobility and chair transfers;

toilet transfers
Home Transfers on and off floor, wheelchair
or child-sized chair transfers; tub
transfers; car transfers
School Toilet transfers; transfers in and out
of school van
Locomotion Hospital Distance/speed on indoor level
surface
Home Moving within a room and between
rooms; carrying objects; opening
doors; negotiating rugs and door
thresholds; outdoor locomotion
curbs, uneven surfaces
School Moving in classroom; going to
different classrooms, bathroom,
cafeteria; negotiating hallways with
crowds, stairs
Communication Hospital Communication with therapist,
doctors, nurses
Home Communication with parents,
siblings, friends
School Communication with teachers,
schoolmates
Play Hospital Play activities in relation to process
of therapy (PT/OT/ST)
Home Play with parents, siblings, friends
School Play with classmates
Self/time Hospital Knows day and time; knows name
orientation Home Understands routine schedule; knows
address; can describe family
members
School Regularly checks clock, associates
time with events
Household/ Hospital Not applicable
community skills Home Care for belongings; initiate
household tasks; explores local
neighborhood; makes transactions
in store
School Follows guidelines of school setting;
explores without getting lost
Safety Hospital Shows appropriate caution
concerning bed and chair transfers
Home Shows appropriate caution
concerning hot or sharp objects;
stairs, crossing streets; offers by
strangers
School Shows appropriate caution
concerning pens, pencils, scissors,
toys, and games
Within a given area of self-care, additional decisions must be made

about which aspects of performance convey most meaningfully the
child's current level of function in daily activities. For example, is the
speed with which feeding is completed an important variation in func-
tional performance? Is it more or less important than the ability to
manage different textures of food? The answers to these questions also
may vary with the context of focus: Speed may be more of a concern in a
school lunchroom than in the family dining room. Given that an as-
sessment is necessarily limited in its length, it is important to examine
carefully the criteria adopted for item inclusion by a given outcome
measure.
In nondisabled children the various aspects of a self-care skill may
be integrated fairly readily over a relatively short period of time. Thus,
functional assessments that are designed for the nondisabled child
may select items that are relatively complex in nature. In contrast,
children with disabilities may have impairments that selectively affect
one aspect of a complex functional skill. In this situation, they may be
unduly penalized by an assessment that requires mastery of all com-
ponents to receive a passing score. An additional challenge in de-
signing a functional assessment for the pediatric rehabilitation patient,
then, is to separate out meaningful functional units within a given
self-care item. For example, in the toileting domain it may be meaning-
ful to separate out the physical subtasks involved in using the toilet
(e.g., managing one's clothes) from the ability to recognize the need to
use the toilet and take oneself into the bathroom. A child might suc-
ceed in each component to different degrees depending on his or her
physical and mental capacities.
The WHO framework identifies manual function as a separate
assessment domain. In the PEDI, we have chosen to assess manual
functions in the context of specific activities, such as use of eating
implements, managing clothing fasteners, or, particularly for the older
child, use of writing or other communication devices. This approach
treats manual function as one of several required component abilities
and focuses the assessment on the accomplishment of the goal instead.
Mobility
The identification of tasks most relevant for daily independence in
mobility function has not been well defined in traditional develop-
mental milestone tests. Very little consideration has been given to
necessary movement skills other than floor mobility and ambulation.
The child with physical disabilities faces numerous obstacles in sim-
ple transfers (e.g., in and out of a chair), in mobility in different envi-
ronments (indoors versus outdoors ), and in the use of adaptive equip-
ment (e.g., a wheelchair).
We have defined five basic elements for the functional mobility
content domain. First, a functional outcome measure for infants and
young children should have items that sample basic movement transi-
tions among developmental positions while playing on the floor. These
may include transitions such as moving from supine to sitting, going
from prone to quadruped position, and getting into a kneeling position.

Secondly, basic transfer items, such as getting in and out of a bed,
chair, toilet, tub/shower, and car or van, should be included for all ages
of children. A third content component includes items that assess
functional sitting positions and the ability to manipulate objects and
perform activities while sitting both on the floor and in a chair. Fourth,
certain body movements such as crouching, stooping, reaching, and
lifting are important functional mobility skills to be sampled in a
disability scale for children at the preschool level and older. The
environmental context of the items and the specific task conditions
need to be specified in as much detail as possible in order to generate
meaningful data for these body movement items. Finally, body trans-
port activities should be sampled for all ages. Components of body
transport may include floor mobility, ambulation indoors and outdoors,
use of stairs, negotiation of outdoor surfaces and ramps, wheelchair
propulsion, running, climbing, and carrying and manipulating objects
while ambulating. Items that sample body transport activities of chil-
dren with physical disabilities may incorporate parameters of distance,
speed, and safety.
Social Function
The social domain is concerned with living with others in a com-
munity, and, by extension, social functional skills are those deemed
relevant and necessary for participation in one's family and culture.
Specification of the arenas of social participation for the young child
and identification of the skills they demand, however, have not been
straightforward tasks. Until recently, many existing measures of this
domain focused on identifying children with clincally significant mal-
adaptive behavior, 1 and thus were unsuitable guides for identifying a
child's positive achievements. This imbalance between positive and
negative behaviors is just beginning to be addressed by recent as-
sessments of social function.37
Measures of developmental stages or milestones also may not
necessarily capture the behaviors that are most rele vant in a functional
sense. This point is best illustrated in considering functional commu-
nication. Many developmental asessements of communication focus
on identifying a child's status in achieving relevant linguistic skills
such as vocabulary or syntax. These measures often do not adequately
capture the significant psychosocial and cognitive, or pragmatic,
aspects of communication that may be critical for achieving effective
social exchanges in real-life contexts.45 Furthermore, by emphasizing
speech as the primary vehicle for communication, measures may fail to
credit the successful alternative pathways to communication achieved
by childre n with disabilitie s.
Although there is general agreement that communication is an
important domain of social function, decisions about the items to be
sampled may depend on the age of the children to be assessed, the
context of concern (e.g., home versus classroom function), and the
purposes of the assessment (i.e ., to guide treatment goal setting or to
assess developmental progress). At a minimum, we argue that func-

tional comprehension and expression should be evaluated separately.
Functional skills that depend on an integration of communication and
other cognitive skills should be considered separately as well because
performance on these specific tasks cannot necessarily be inferred on
the basis of level of communication alone. Such items include peer
interaction, problem solving, and self- and time-orientation.
Successful participation in one's community also depends on the
ability to function safely, to initiate appropriate behaviors, and to in-
hibit inappropriate behaviors in the social contexts expected for one's
age group. Thus, items measuring these competencies in their devel-
opmentally relevant form should be a part of a functional assessment.
Finally, we propose two additional domains of activity for a pedi-
atric functional outcome measure. First, the ability to engage in play
should be examined because, aside from self-care activities, it is the
major functional arena of early childhood and is also the context in
which significant peer interaction occurs. Second, the child's partici-
pation in household chores provides an early measure of the gradual
move toward independence in work and living skills.
MEASUREMENT DIMENSIONS
Measurement dimensions of functional outcome measures in the

adult rehabilitation literature are quite diverse and have not been
confined to only one dimension per instrument. 24 In addition to the
primary measurement dimension of the burden of care, other measure-
ment dimensions include the generalizability of the performance, en-
durance, use of specialized equipment and devices, and quality of the
performance with regard to pain, speed, confidence, initiation, and
difficulty.
Most adaptive and developmental tests have used child achieve-
ment as the basis for measurement of function. The degree of caregiver
assistance has not been prominently used as a measurement dimen-
sion for pediatric functional outcome measures until recently. 35 • 40 We
view caregiver assistance as an indirect measure of child change, in
that it reflects directly how the parents or other caregivers have
changed their level of help in getting functional activities accom-
plished. Less assistance from parents or teachers may reflect an in-
creasing capability level of the child but may also reflect changes in
caregiver practices that may not always be related to child change.
Owing to the uncertainty of relying on changes in caregiver activities
as the only means to reflect changes in child functional level, we have
opted to use both child achievement and caregiver assistance measure-
ment dimensions in the development of the PEDI. We believe that,
although these measurement dimensions are highly related, separate
measures of the changing behavioral repertoire of the child and
changes in caregiver practices provide a more complete picture of
changes in functional status. We have also chosen to separate the use of
devices and modifications from the caregiver assistance scale. Al-

though this has not been a common practice in other outcome mea-
sures, considerable ambiguity can arise when caregiver assistance and
use of devices are embedded within the same scale. 29 For example, a
child who is independent of caregiver assistance in ambulation may
require use of a cane for safety. Although the child is independent of
"person" help, because of his cane, his score on most scales would
never reflect full independence from caregiver assistance.
MODE OF ADMINISTRATION
The mode of administration of a functional outcome measure de-

pends upon the content of the test, the measurement dimension(s), and
the targeted respondent. Most functional and adaptive measures uti-
lize one or more of the following procedures to collect data: direct
observation, clinical judgment, structured interviews, and question-
naires. 38· 49 Directly observing a child's performance under stan-
dardized conditions may provide extremely accurate data, but this
approach can be costly and impractical in some situations. Instruments
administered by direct observation tend to provide information on
capability and not necessarily on actual performance in other settings.
Administration of functional assessments by clinical judgment,
questionnaire, or structured interview requires less time than direct
observation but may be less accurate and prone to bias or memory
errors. Parent-professional disagreement in reporting child status has
been acknowledged in the literature. 83 However, judgment-based
measures do have the advantages of supporting team participation and
communication, recognizing the importance of ecologic variables, and
valuing parent and teacher involvement in the assessment process. 28
Care must be taken to standardize interviews and questionnaires as
strictly as possible. The level of detail of functional performance that
can be acquired in interviews and questionnaires of parents may be
less than can be obtained with direct observation and the use of out-
come measures by clinical staff. The need for detailed functional infor-
mation must be weighed against unnecessary intrusion, needs for spe-
cialized equipment and training of staff, and a sensible mix of
assessment and treatment priorities.
MEASUREMENT PROPERTIES
A number of sources provide the clinician with excellent guide-

lines for evaluating the measurement properties of a functional out-
come measure. 5 • 6 • 24• 53• 56 • 78 Four important clinical measurement
properties are highlighted below: (1) standardization, (2) scalability,
(3) responsiveness, and (4) practicality.
Standardization
Standardization refers to the explicit designation of administration
or interview procedures, availability of strict guidelines for scoring,
provision of technical information such as reliability and validity data
to support specific clinical applications, stated qualifications and train-
ing procedures of the examiner, and performance data from normative
or comparative populations. One of the most obvious deficiencies in
functional scales developed by rehabilitation practitioners for adults
and children has been the lack of standardization. 51 The requirements
and resources needed to standardize an outcome measure are exten-
sive, and often clinicians have opted to use outcome measures with
limited or nonexistent standardization properties. Although use of
functional outcome measures with less than optimal standardization
properties may be necessary at this time, clinicians can play an ex-
tremely important role in improving the standardization of functional
outcome measures. Collaboration between clinicians and test de-
velopers is needed to collect the enormous amount of clinical data
required for reliability studies, clinical validation, and the norming
process. 17
A particularly formidable task in the standardization process of
pediatric functional outcome measures is the development of perfor-
mance data on a normative or comparative sample. Developmental
tests used by many practitioners in pediatric rehabilitation have tradi-
tionally been norm-referenced; that is, standards of what is typical
performance for a child at a given age are used for comparison. An
important property of discriminative functional outcome measures is
the determination of age-related functional performance and caregiver
dependence. Since the temporal pattern of neurologic impairments
may be static, transient, or progressive, 32 the provision of a norm-based
comparison would help identify the rate and pattern of functional
improvement or deterioration in children.
Although norms based on nondisabled populations are useful for
some purposes, potentially more valuable referent groups for clinical
comparisons are populations of children treated in rehabilitation. Per-
formance data on these referent groups could provide an analysis of the
performance of an individual child in relation to age-matched peers
with similar diagnoses. Unfortunately, such disability-comparison data
have been collected for only a few childhood diagnoses, such as for
children with myelomeningocele. 89
Many of the functional and activities of daily living scales used in
pediatric rehabilitation are criterion-referenced tests, which examine
individual performance in relation to external standards. These stan-
dards may be directly related to task analyses of functional items and
often lead into instructional strategies and the identification of factors
that restrict the development of functional independence. Criterion-
referenced outcome measures are most useful for evaluation and treat-
ment planning.
712 STEPHEN M. HALEY ET AL .
Unfortunately, establishing age-related or performance criteria for

functional outcome measures is inherently value-laden. 19 Achieving
independence in certain self-care and mobility skills is highly depen-
dent upon cultural values, parenting patterns, and proper judgment by
parents of when children no longer require assistance. Although in-
struments require criteria by which to judge performance, clinicians
must take care to appropriately interpret normative and comparative
data for the unique functional profiles of individual children and fam-
ilies.
Scalability
Scalability is a property of a defined set of items that refers to the
degree to which they distribute along a unidimensional continuum
ranging from tasks easily accomplished to those more difficult to ac-
complish. Many developmental tests used in pediatric rehabilitation
have item sequences and scoring procedures not based on an empiric
ordering of items but rather determined by the ability of each suc-
cessive item to reflect an increase in the percentage of passes with
increasing age. 33 Developmental scales created in this manner do not
meet assumptions that the sequence of the items has any underlying
unidimensional or cumulative basis. Developmental and adaptive in-
struments based on a scaling technique have been shown to provide
more valid sequences of adaptive behavior. 15 • 90• 95 Rasch item re-
sponse theory (IRT) models 102 provide a method of scaling behaviors
which holds much promise for the sequencing of functional behaviors
in children. Advantages of Rasch models include (1) the opportunity to
test the "fit" of an individual child's response pattern to that of the
scale pattern expected, (2) conversion of ordinal data to an interval
level of measurement, and (3) enhancement of aggregate score devel-
opment and interpretation. These models have seen limited applica-
tion in the development of functional outcome measures in rehabilita-
tion. 27• 62• 86 A more detailed discussion of the importance of scaling for
the clinical interpretation of summary scores is given below.
Responsiveness
Re sponsiveness is the ability of an outcome measure to detect a
clinically important difference. Responsiveness is an essential property
of an outcome measure when used for monitoring and evaluative pur-
poses. Functional outcome measures constructed as evaluative mea-
sures include items that are most likely to change because of interven-
tion and have sufficient scoring increments to detect meaningful
changes. Rosenbaum and colleagues 77 provide a series of recommen-
dations by which an evaluative outcome measure can be validated.
Clinicians using functional outcome measures for program evaluation
should determine the responsiveness of that measure in pilot trials
prior to adoption for more general use. Functional outcome measures
being considered for dependent variables in clinical trials should also
be examined for responsiveness to detect differences in light of the
heterogeneity of the sample and the expected sample availability.61
Practicality
Although this is not strictly a measurement property, functional
outcome measures for routine clinical use need to be as practical as
possible. Clinicians in a rehabilitation service setting must realize,
however, that assessment in pediatric disability is complex and that
oversimplified outcome measures do not provide essential information
for adequate treatment planning or monitoring of progress. Outcome
measures are more readily accepted if their relevance to treatment and
program decisions is unmistakably clear. The collection, storing, and
retrieval of data from functional outcome measures can be facilitated
by the use of computers and a well-designed data management plan.
Efficient use of functional outcome data is best achieved if clinical
staff, middle management, and senior administration officials have all
made strong commitments to the implementation and maintenance of a
functional outcome data system. 86
ALTERNATIVE APPROACHES
Although most pediatric rehabilitation facilities seek outcome

measures to assess groups of children within a program, many clini-
cians supplement documentation with more client-centered and indi-
vidualistic approaches. Merbitz has favored the use of outcome vari-
ables with more precision than a typical ordinal rating scale of
dependence. 68 For example, he advocates the use of interval or ratio
measurement parameters, such as the amount of time needed to am-
bulate a specified distance or the actual number of hours of attendant
care needed by a patient. Another approach to goal setting and docu-
mentation of functional outcomes is the use of goal-attainment scaling.
In this approach, individual functional goals are established for a child,
and criteria to determine less-than-expected and more-than-expected
change are defined. Goal-attainment scaling has been used success-
fully in special education programs 87 and in pediatric rehabilitation
programs.20, 92
REVIEW OF SELECTED PEDIATRIC FUNCTIONAL

OUTCOME MEASURES
This selective review of measures incorporates only generic mea-

sures of childhood disability and includes only the most widely used
measures in pediatric rehabilitation that are currently standardized or
undergoing the process (Table 3). No attempt has been made to be
all-inclusive. Consult other sources 8· 41 • 82 for a more comprehensive
review of adaptive and functional measures.
Battelle Developmental Inventory (BDI)
The BDI 70 is a standardized, norm-referenced instrument that
incorporates a number of developmental and adaptive activities in the
Table 3. Summary of Characteristics of Selected Pediatric Functional

Outcome Measures
OUTCOME MEASURE AGE RANGE DESCRIPTION
Battelie 0-8 years An administered battery of

Developmental developmental and adaptive skills;
Inventory (BDI) includes five content domains:
personal-social, adaptive, motor,
communication, cognitive. A screening
test is available.
Vineland Adaptive 0-19 years Administered through a respondent and
Behavior Scales questions posed by a trained examiner;
(VABS) content domains sampled are
communication, daily living skills,
socialization, motor skills. Three
versions are available: Survey Form,
Expanded Form, Classroom Edition.
Gross Motor An evaluative instrument to assess gross
Function Measure motor function. Motor skills sampled
(GMFM) are supine, prone, quadruped, sitting,
kneeling, standing, walking, and
climbing.
Wee-Functional 6 mo-7 years Administered by observation or
Independence structured questions. Ratings of child
Measure (Wee- on 7-point scale of burden of care.
FIM) Item clusters include self-care,
sphincter control, mobility, locomotion,
communication, social cognition.
Pediatric Evaluation 6 mo-7 years Rated by informant or by interview.
of Disability Includes three major content domains:
(PEDI) self-care, mobility, social function.
Assesses separate measurement
dimensions of functional skills,
caregiver assistance, and modifications.
Scales of 0-adult Structured interview of skills needed to
Independent function independently in home,
Behavior (SIB) social, and community settings;
includes four adaptive clusters: motor,
social interaction and communication,
personal living, and community living.
areas of personal-social, adaptive (activities of daily living), motor,

communication, and cognitive performance. The test items are appli-
cable from birth to 8 years of age. The test uses a variety of formats for
administration, including structured interviews, observation, and di-
rect administration of items. The BDI does not require extensive or
expensive equipment and does list item modifications for children
with physical handicaps. Items are scored on a full, partial, and no pass
rating scale. Many of the motor and adaptive items are developmental
in nature, and only a subset of items is relevant for functional as-
sessment of the child with severe disabilities. A brief screening ver-
sion is available. The instrument is appropriately standardized and has

adequate reliability and validity data.
Vineland Adaptive Behavior Scales (VABS)
The VABS 90 assess the ability of children and adolescents be-
tween birth and 19 years to perform necessary activities of daily living.
The VABS covers a wide range of performance areas, including com-
munication, daily living skills (personal, domestic, community), and
motor. There are three separate versions of the VABS: (1) a survey
form, (2) an expanded form, and (3) the classroom edition. All three
editions are well standardized and yield scores that are easy to inter-
pret. The VABS are useful for overall descriptions of function in
school-aged children and adolescents but do not provide a sensitive
analysis of dependence in functional items for very young children or
children with severe physical or cognitive delays.
Gross Motor Function Measures (GMFM)
The GMFM 79 is a criterion-referenced measure developed for the
purpose of detecting and monitoring change in young children with
cerebral palsy. The test consists of 85 items that represent develop-
mental performance and mobility in the following positions and activi-
ties: supine, prone, four-point position (quadruped), sitting, kneeling,
standing, walking, and use of stairs. The entire item pool is strictly
focused on gross motor function; however, certain important func-
tional items such as wheelchair mobility and transfer items are not
included. A four-point rating scale has been developed, which mea-
sures the amount of the activity completed (cannot initiate, initates
independently, partially completes, and completes independently).
Children receive no scoring penalties if they complete the activity
with equipment or adaptive devices. Initial data have demonstrated
good interrater reliability on physically impaired children and promis-
ing sensitivity to changes seen in children with cerebral palsy over a
6-month data-collection period.
Wee-Functional Independence Measure (Wee-FIM)
Owing to the diversity and lack of consistency in functional as-
sessment tools for adults, Granger and colleagues 36 conceptualized a
systematic and unified approach for acquiring data on functional inde-
pendence of adults in medical rehabilitation. The Functional Inde-
pendence Measure (FIM) is an 18-item measurement tool that is
scored with seven levels of functional dependence. These functional
content domains include self-care, sphincter control, mobility, loco-
motion, communication, and social cognition (social interaction, prob-
lem solving, and memory). The Wee-FIM 35 makes minor changes in
the item content and the administration procedures of certain items of
the FIM so that the test is more applicable for children. It is designed
to closely correlate with the adult version so that scores from the child
and adult version are compatible. This design has significant practical
utility because many professionals in rehabilitation medicine are fa-

miliar with the scoring procedures and format of the adult FIM. The
burden-of-care measurement dimension in the adult version is main-
tained in the pediatric version. Standardization of the Wee-FIM on a
normative sample is planned.
Pediatric Evaluation of Disability Inventory (PEDI)
The PEDI40 is a judgment-based instrument that can be adminis-
tered by rehabilitation professionals, parent report, or structured inter-
view. The main purposes of the PEDI are to provide a clear description
of functional status and to evaluate change due to rehabilitation inter-
ventions. Items on the PEDI are grouped into three content domains:
self-care, mobility, and social function. For each content domain, three
measurement dimensions are recorded: functional skill level, care-
giver assistance, and modifications. Standardization on a normative
sample is underway, and the test will be developed under the Rasch
IRT scaling model. Initial validity data have been published. 25
Scales of Independent Behavior (SIB)
The SIB, 15 part of the Woodcock-Johnson Psychoeducational Bat-
tery, is an individually administered structured interview that mea-
sures functional skills needed at home and in social and community
settings. The SIB items are applicable for infant to adult levels, al-
though they are best used for the child over 6 years of age through
adolescence. The test is well standardized, and a number of summary
scores are available. Content includes four adaptive skill clusters:
motor, social interaction and communication, personal living, and
community living. The SIB also has a short form for rapid screening or
assessment.
Other Measures
Many other pediatric instruments and checklists with at least some
functional content have been published. Some have limited standardi-
zation, technical data, or development of summary score interpreta-
tions. A partial list of these includes AAMD Adaptive Behavior Scale, 71
AAMD Adaptive Behavior Scale-School Edition,55 Adaptive Behavior
Inventory for Children,69 Alpern-Boll Developmental Profile Il,4
Balthazar Scales of Adaptive Behavior, 10 Brigance Diagnostic Inven-
tory of Early Development, 12 Callier-Azusa Scales,93 Carolina Curric-
ulum for Handicapped Infants and Infants at Risk, 50 Developmental
Indicators for the Assessment of Learning, 64 Early Coping Inven-
°
tory, 103 Hawaii Early Learning Profile,3 Kent Infant Development
Scale, 73 Klein-Bell Activities of Daily Living for Children, 57 Pediatric
Assessment of Self-Care Activities, 22 Perceptions of Developmental
Skills Profile,9 Sequenced Inventory of Communication Develop-
ment,46 Social Skills Rating System, 37 T.M.R. School Competency
Scales,60 TARC Assessment System, 80 Test of Early Socioemotional
Development,47 Uniform Performance Assessment System,42 and Wis-
consin Behavior Rating Scale. 88
ADVANCING THE STATE OF THE ART IN MEASURI NG

PEDIATRIC FUNCTION
Aggregate Scores
One of the most important advantages in the use of standardized
pediatric functional outcome measures is the identification of an aggre-
gate index of performance. The advantages of having an overall score
to summarize performance include the facilitation of interpreting com-
plex data, the rapid comparison of performance changes, and the abil-
ity to use individual data in group comparisons. 49 Many of the develop-
mental and adaptive instruments used with children have been
standardized on a normative sample and thus provide a series of age-
related scores to assess performance. In general, most functional as-
sessment instruments used in rehabilitation either use implicit
weights 63 or simply derive summary scores from adding ordinal scale
ratings. Unfortunately, using unsubstantiated implicit weighting
schemes and simple additive scoring procedures may provide a very
misleading index of a child's functional status or functional change
over time. Recently, this issue has emerged as a major challenge to the
appropriateness of summary scores in a number of widely used func-
tional outcome measures for adults and children.68 • 100
Rasch Model
Development of new functional outcome measures in pediatric
rehabilitation can be enhanced by use of a test development technol-
ogy that organizes items into hierarchical ability scales. By developing
ability scales of functional items, it is possible to avoid many of the
summary score problems inherent in other functional outcome mea-
sures. The s.gecific measurement technology is referred to as the Rasch
IRT model. 2 A primary purpose of this model is to aid in the construc-
tion of sound testing instruments through assessing the extent to which
functional items fit a hypothesized hierarchical, unidimensional struc-
ture.
A hierarchical test attempts to define functional performance as a
set of sequential tasks that represent increasingly more complicated
cumulative functions along a single dimension. Each independent
dimension is then operationally defined in terms of a continuum ofless
difficult to more difficult tasks. In this model, mastery of lower level
tasks is requisite for success in higher level tasks. Figure 5 presents a
hierarchical model of the Mobility items in the Caregiver Assistance
section of the PEDI from preliminary normative data. Note that the
items are arranged in a scale in which easy items (indoor locomotion)
and difficult items (car transfers) are identified. This scale provides the
framework from which a summary score for Caregiver Assistance in
mobility can be developed.
The Rasch model provides a mechanism for identifying child sta-
tus through the placement of child ability measures along dimensions
(domains) of functional behavior. A valid ability measure requires a
High Difficulty
5 Car transfers (4.86)
Tub transfers (4.17)

4
Difficulty 3 Bed mobility and transfers (2.82)

Stairs full flight (2.77)
Levels Chair/toilet transfer (2.47)
2 Outdoor locomotion 150 feet (2.1 O)
1 Indoor locomotion 1 O feet (1.00)
0
Low Difficulty
Figure 5. Preliminary difficulty values and scale hierarchy for mobility items on
PEDI.
relatively low score for children with low performance and a relatively
high score for children with high performance. However, if a child
receives a low score that results from accomplishing a few of the most
difficult tasks while not accomplishing relatively easier ones, then the
summary score does not adequately reflect the child's true ability.
Rasch models provide goodness-of-fit statistics that test these assump-
tions of congruence between one's observed clinical score and the
expected level of performance represented by that summary score. 101
The scoring system and its success in identifying performance levels
depend upon the validity of the scale for relevant populations of chil-
dren. In the example given, this scale was very stable for nondisabled
children. Future data collection in the development of the PEDI will
establish the validity of the scale for children with a wide variety of
disabilities. If the scales developed for both normative and clinical
groups fit the Rasch model, clinicians will be able to represent a child's
performance accurately with a summary index and chart progress in a
meaningful manner as functional performance undergoes changes.
SUMMARY AND RECOMMENDATIONS
The development and use of pediatric functional outcome mea-

sures are clearly in their infancy. However, the field is quickly recog-
nizing that functional outcome measurement is fundamental to the
evaluation of rehabilitation services and the improvement of care.
Clinicians have generally been slow in adopting functional outcome
measures in routine clinical use. Pediatric rehabilitation programs

have not kept pace with the growing demand for accountability, docu-
mentation, and outcome research needs. In the current health care
environment, information on functional outcomes will drive future
reimbursement and policy decisions that will have a profound impact
on pediatric rehabilitation services. Wider clinical participation in the
use of pediatric functional outcome measures within and across insti-
tutions should be an important goal in the improvement of care of
individual children. Multi-institutional collaboration in the use of
functional outcome measures would provide powerful data with which
to make major program and policy decisions.
Functional outcome measures can be used to enhance the ef-
fectiveness of a clinical program and should be selected carefully.
Selection of an outcome measure should involve the following
considerations: (1) purpose, (2) conceptual framework, (3) content,
(4) measurement dimensions, (5) mode of administration, and (6) mea-
surement properties including standardization, interpretation of a
summary score, and clinical feasibility. Functional assessment in chil-
dren is complex, and future work in instrument development and
validation is needed. Continued collaboration among test developers
and clinical programs is required to create the most efficient and meth-
odologically sound outcome measures for use in pediatric rehabilita-
tion programs.
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Address reprint requests to

Stephen M. Haley, PhD, PT
Department of Rehabilitation Medicine
New England Medical Center Hospitals
750 Washington Street #75K/R
Boston, MA 02111

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Pediatric Rehabilitation 1047-9651/91 $0.00 + .

Stephen M. Haley, PhD, PT,*

Leaders in many disciplines involved in pediatric rehabilitation

*Assistant Professor, Tufts University School of Medicine; and Director of Research,

This article reviews principles and methods for assessing func-

DEFINITIONS AND TERMINOLOGY RELATED TO

activities of daily living. 97 By definition,functional outcome measures

IMPAIRMENTS DISABILITY HANDICAP

grooming). The handicap domain encompasses the ability to be active

functionally related developmental activities. 18 Education and reha-

for effective rehabilitation planning and intervention. A limited num-

PURPOSES AND USE OF PEDIATRIC FUNCTIONAL

One of the most important elements in selecting a pediatric func-

content and scaling requirements of functional outcome measures cre-

tion of an appropriate treatment plan, and assisting in individual deci-

quality assurance systems designed to review program inputs,

CONCEPTUAL AND METHODOLOGIC ISSUES

A number of conceptual frameworks are important to consider

Functional Skills / Behaviors

Low Household! Self-

interactions between rehabilitation outcomes and personal, experien-

Environmental and Social Context Framework

Content of a pediatric functional outcome measure depends upon

Table 1. Summary of Majar Con tent Elements for Pediatric Functional

Eating Bed mobility Expression

Table 2. Context Emphasis for Selected Functional Skills

Eating Hospital Ability to bring food to mouth,

Table 2. Context Emphasis for Selected Functional Skills (continued).

Transfers Hospital Bed mobility and chair transfers;

Within a given area of self-care, additional decisions must be made

from prone to quadruped position, and getting into a kneeling position.

assess developmental progress). At a minimum, we argue that func-

Measurement dimensions of functional outcome measures in the

devices and modifications from the caregiver assistance scale. Al-

The mode of administration of a functional outcome measure de-

A number of sources provide the clinician with excellent guide-

Unfortunately, establishing age-related or performance criteria for

Although most pediatric rehabilitation facilities seek outcome

REVIEW OF SELECTED PEDIATRIC FUNCTIONAL

This selective review of measures incorporates only generic mea-

Table 3. Summary of Characteristics of Selected Pediatric Functional

Battelie 0-8 years An administered battery of

areas of personal-social, adaptive (activities of daily living), motor,

sion is available. The instrument is appropriately standardized and has

utility because many professionals in rehabilitation medicine are fa-

ADVANCING THE STATE OF THE ART IN MEASURI NG

Tub transfers (4.17)

Difficulty 3 Bed mobility and transfers (2.82)

1 Indoor locomotion 1 O feet (1.00)

SUMMARY AND RECOMMENDATIONS

The development and use of pediatric functional outcome mea-

measures in routine clinical use. Pediatric rehabilitation programs

Tufts Assessment of Motor Performance. In Wilson M (ed): Objective Measure-

approach to the evaluation of child progress. Top Early Childhood Spec Ed 1:

Address reprint requests to

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