Arthritis & Rheumatism (Arthritis Care & Research)
Vol. 49, No. 5S, October 15, 2003, pp S105–S112
DOI 10.1002/art.11400
© 2003, American College of Rheumatology
MEASURES OF QUALITY OF LIFE
Pediatric Measures of Quality of Life
The Juvenile Arthritis Quality of Life Questionnaire (JAQQ) and the Pediatric
Quality of Life (PedsQL)
Pamela Degotardi
JUVENILE ARTHRITIS QUALITY OF
LIFE QUESTIONNAIRE (JAQQ)
General Description
Purpose. This questionnaire was designed to
assess the health-related quality of life in children
(aged 2–18 years) diagnosed with juvenile
rheumatoid arthritis (JRA) or juvenile
spondylarthritides (JSpA).
Content. The 74 items in the final version of the
JAQQ measure several domains of health including
physical functioning, emotional well-being, and an
array of general symptoms. Specifically, items are
grouped into 4 dimensions relevant to the child’s
quality of life: gross motor function, fine motor
function, psychosocial function, and systemic or
general symptoms. A measure of pain (100 mm
pain Visual Analog Scale [VAS]) has been added to
the scale.
Developer/contact information. Dr. Ciaran Duffy,
Director, Division of Rheumatology, Montreal
Children’s Hospital, Rm C503, 2300 Tupper St.,
Montreal, Quebec, Canada H3H 1P3. E-mail:
ciaran.duffy@muhc.mcgill.ca.
Versions. English and French versions of the
JAQQ were originally developed and validated by
the authors. A Dutch version has recently been
developed and is being tested.
Number of items in scale. The JAQQ contains 74
items, and a 100-mm pain VAS.
Pamela Degotardi, PhD: Schneider Children’s Hosptial,
New Hyde Park, New York.
Address correspondence to Pamela Degotardi, PhD, Divi-
sion of Child and Adolescent Psychiatry, Schneider Chil-
dren’s Hospital, 270-05 76th Avenue, New Hyde Park, NY
11040. E-mail: pdegotardi@hotmail.com.
Submitted for publication April 23, 2003; accepted April
24, 2003.
Subscales. There are 4 subscales of the JAQQ:
gross motor function (17 items); fine motor
function (16 items); psychosocial function (22
items); general/systemic symptoms (19 items). A
pain VAS is additional.
Populations. Developmental/target. Children
with JRA or JSpA. The JAQQ was developed and
psychometric properties were tested (1) on a
clinical sample of over 120 children diagnosed
with JRA or JSpA. This instrument was designed to
measure responsiveness to treatment, and as an
outcome measure in clinical trials.
Other uses. Potentially, the JAQQ could be used
to measure quality of life in other pediatric
rheumatic diseases.
WHO ICF Components. Body function;
Impairment; Activity limitation; Participation
restriction; Environmental factor.
Administration
Method. Self-administered questionnaire.
Younger children (⬍9 years) may require
assistance. Alternatively, parents may complete the
questionnaire. Duffy et al (2) report moderate to
good parent-child agreement on each of the four
dimensions of the JAQQ: gross motor function
0.51; psychosocial function 0.56; fine motor
function 0.64; and general symptoms 0.64.
Children (parents) respond to a stem question:
“How often have you/your child, over the past two
weeks, had difficulty with the following activities
as a result of arthritis or its treatment?”
After completing the JAQQ for the first time
children are asked to select 5 items in each of the
4 dimensions that apply most directly to them or
that best describes their degree of dysfunction.
Children are also asked to volunteer their own
items for each dimension. Each item is rated (using
a 7-point Likert scale) based on how often the
S105
S106
particular item is a problem for the child. These 20
items selected by the child are used in subsequent
administrations of the scale to assess change in
functional status.
At each administration children are asked to
rate their level of pain using a 100-mm pain VAS.
Younger children have the option of using a 5-
point happy face model to indicate pain level.
Training. Minimal training is required. The
JAQQ is easy to administer and is self-explanatory.
Time to administer/complete. A child and/or
parent can complete the scale within 20 minutes
initially, and within 5 minutes for subsequent
administrations.
Equipment needed. Pen, paper, and solid writing
surface.
Cost/availability. The JAQQ is available at no
cost. Contact Dr. Duffy for a copy of the
instrument. E-mail: ciaran.duffy@muhc.mcgill.ca.
Scoring
Responses. Scale. Children indicate how often
each particular item is a problem for them using a
7-point Likert scale. Each item is scored from 1 to
7 (“none of the time” to “all of the time”), with 7
indicating worst function. If the child is unable to
perform the activity because it is inappropriate for
his/her age, then a score of 0 “does not apply” is
assigned.
Score range. Mean scores range from 1 to 7 for
each of the 4 Dimension Scores and the Total
JAQQ Score. The pain VAS ranges from 0 to 100.
Interpretation of scores. There are no
established cut-off points. A higher score (7 ⫽
maximum) represents greater dysfunction.
Method of scoring. Although the scoring system
is somewhat novel, the JAQQ can be easily hand
scored, and Dimension Scores are simple to
calculate. The mean score for the 5 items
nominated by the child as most personally relevant
in each of the 4 dimension is computed as the
Dimension Score. Total JAQQ Score is computed
as the mean across all 4 dimensions. The change in
scores from one administration to the next can be
computed for each dimension and for the Total
JAQQ Score. Items are not weighted.
Time to score. Brief, approximately 5 to 10
minutes.
Degotardi
Training to score. Minimal.
Training to interpret. Minimal.
Norms available. No. The JAQQ is
individualized for each child (through the method
of allowing each child to select the 5 most relevant
items in each dimension), therefore norms are not
available, and comparison between groups is
limited.
Psychometric Information
Reliability. Internal consistency. Not reported.
Test-retest reliability. Not applicable because the
JAQQ is designed to be responsive to changes in
functional status.
Validity. Content validity. Items in the JAQQ
were generated by a panel of experts (including,
pediatric rheumatologists, developmental
pediatrician, clinical epidemiologist). Some items
on psychosocial function were formulated based
on Achenbach’s Child Behavior Checklist.
Extensive interviews with 91 parents and their
children with rheumatic disease elaborated and
refined this item pool. Cluster analysis verified the
grouping of items according to theoretical
dimensions. Items considered redundant, or
unclassifiable were discarded. The number of items
was reduced from 220 to 74. During this
development phase, a dimension (4 items)
measuring school/cognitive function was deleted
(these 4 items were recategorized into either fine
motor or psychosocial function). Twenty
clinicians/pediatric rheumatology experts were
asked to classify all items according to
applicability to age, and disease onset type. The
panel was also asked to classify the items into the
5 dimensions (gross motor, fine motor,
psychosocial, school/cognitive, and
general/systemic symptoms), and score the
potential responsiveness of each item. The experts
agreed (95%) that the JAQQ measured the
dimensions it purported to, and there was a high
acceptance rate (⬎80%) for individual items (1).
Construct validity. This was confirmed based on
correlations that agreed with a priori predictions
between dimensions on the JAQQ and clinical
measures of disease activity (1). Correlations were
high for comparisons between the JAQQ and pain
scores (r ⫽ 0.72); moderate for joint severity scores
and the fine motor dimension (r ⫽ 0.36), and low
for disease activity and psychosocial functioning
and (r ⫽ 0.19).
Pediatric Quality of Life
Sensitivity/responsiveness to change. Several
studies by Duffy and colleagues have addressed the
issue of the JAQQ’s responsiveness. All have
concluded that the JAQQ is sensitive enough to
measure clinically important change. Duffy et al (3)
assessed responsiveness in 47 patients evaluated
twice. Good correlations were found between all
the JAQQ dimensions, pain, and physician’s global
evaluation of change (0.48 – 0.56). These results
were replicated in a 1995 study of 120 patients. In
a recent study Duffy et al (4) compared 50 children
with JIA following new drug treatment. At 6, 12,
and 18 weeks following treatment onset patients
were rated as either improved or not improved
based on a composite of 6 standard clinical
measures (i.e., joint count, pain, joint severity,
erythrocyte sedimentation rate, physician global
assessment, child/parent global assessment).
Agreement levels (Kappa) were assessed between
clinical improvement and patient’s self-reported
functional status on the CHQ, CHAQ and JAQQ.
Values for each of these three measures at 1, 12,
and 18 weeks respectively were as follows:
Childhood Health Assessment Questionnaire
(CHAQ) (0.03, 0.40, and 0.36), The Child Health
Questionairre (CHQ) (0.42, 0.50, and 0.45), and
JAQQ (0.53, 0.50 and 0.53). These studies indicate
the JAQQ is able to accurately assess clinically
significant improvement, and further, the data
suggest the JAQQ may be more accurate than
generic pediatric measures of functional status (i.e.,
the CHQ or CHAQ).
Comments and Critique
The JAQQ is a rheumatology-specific measure
that includes a spectrum of items relevant to the
child’s health, functional status, and emotional
well-being. However, given that it is targeted to a
pediatric population, it is surprising a measure of
school/cognitive functioning was omitted from the
final version of the scale. The ability to engage
fully in school activities is often a critical issue for
children with rheumatic disease, and impacts their
quality of life.
One advantage of the JAQQ is that it is
individualized (i.e., the child selects the 5 items in
each dimension that are most problematic, and it is
only these items that are scored on subsequent
administrations of the scale). Thus, the scale is
fine-tuned for each patient. This increases the
sensitivity to clinically important changes in each
child’s condition. However, as Duffy et al (5) note,
this individualization is also the biggest drawback
of the JAQQ. Each child is essentially completing a
different instrument, thus, comparison across
groups is difficult.
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To summarize, the JAQQ is a carefully
developed instrument with excellent validity and
responsiveness. However, there remains the
nagging question of the measure’s reliability. A
caveat: this instrument is still undergoing testing
and 3 manuscripts are in preparation (personal
communication, Duffy January 30, 2003); therefore,
it is possible that this issue will be addressed soon.
In its present form the JAQQ is a suitable
instrument for clinical trials, and is recommended
for monitoring changes in children’s HRQOL over
the course of illness.
References
1. (Original) Duffy CM, Arsenault L, Watanabe Duffy
KN, Paquin JD, Strawczynski H. The Juvenile
Arthritis Quality of Life Questionnaire: development
of a new responsive index for juvenile rheumatoid
arthritis and juvenile spondyloarthritides.
J Rheumatol 1997;24:738 – 46.
2. Duffy CM, Arsenault L, Watanabe Duffy KN. Level of
agreement between parents and children in rating
dysfunction in juvenile rheumatoid arthritis and
juvenile spondyloarthritides. J Rheumatol 1993;20:
2134 –9.
3. Duffy CM, Arsenault L, Watanabe Duffy KN, Paquin
JD, Strawczynski H. Validity and sensitivity to change
of the Juvenile Arthritis Quality of Life Questionnaire
[abstract]. Arthritis Rheum 1993;36 Suppl 9:S144.
4. Duffy CM, Watanabe Duffy KN, Gibbon M, Yang H,
Platt R. Accuracy of functional outcome measures in
defining improvement in juveniile idiopathic arthritis
[abstract]. Annal Rheum Dis 2000;59:724 –5.
5. Duffy CM, Tucker L, Burgos-Vargas R. Update on
functional assessment tools. J Rheumatol 2000;27
Suppl 58:11– 4.
Additional References
Duffy CM, Arsenault L. The Juvenile Arthritis Quality of
Life Questionnaire: a responsive index for chronic
childhood arthritis [abstract]. Arthritis Rheum
1992:35 Suppl 9:S222.
Duffy CM, Arsenault L, Watanabe Duffy KN, Paquin JD,
Strawczynski H. Relative sensitivity to change of
the Juvenile Arthritis Quality of Life Questionnaire
following a new treatment [abstract]. Arthritis
Rheum. 1994;37 Suppl 9:S196.
Duffy CM, Arsenault L, Watanabe Duffy KN, Paquin JD,
Strawczynski H. Relative sensitivity to change of
the Juvenile Arthritis Quality of Life Questionnaire
on sequential followup [abstract]. Arthritis Rheum.
1995;38 Suppl 9:S178.
Duffy CM, Lovell DJ. Assessment of health status,
function and outcome. In Cassidy JT, Petty RE
(editors). Textbook of pediatric rheumatology. New
York:WB Saunders; 2001.
Duffy CM, Watanabe Duffy KN. Health assessment in the
rheumatic disease of childhood. Curr Opin
Rheumatol 1997;9:440 –7.
S108
Eiser C, Morse R. A review of measures of quality of life
for children with chronic illness. Arch Dis Child
2001;84:205–11.
Eiser C, Morse R. The measurement of quality of life in
children: past and future perspectives. Dev Behav
Pediatr 2001;22:248 –56.
Feldman BM, Grundland B, McCullough L, Wright V.
Distinction of quality of life, heath related quality
of life, and health status in children referred for
rheumatologic care. J Rheumatol 2000;27:226 –33.
Tucker LB. Whose life is it anyway? Understanding
quality of life in children with rheumatic diseases.
J Rheumatol 2000;27:8 –11.
PEDIATRIC QUALITY OF LIFE (PEDSQL)
General Description
Purpose. The PedsQL Measurement Model
combines a generic instrument and a
rheumatology-specific instrument (1). The PedsQL
4.0 is designed to measure health-related quality of
life (HRQOL) in healthy children and those with
chronic health conditions, and the PedsQL
Rheumatology Module 3.0 is designed to measure
specific components of HRQOL relevant to
children with rheumatic disease. It is suitable for
children ages 2–18 years.
Content. Items in the PedsQL 4.0 Generic Core
Scales are designed to measure the core
dimensions of health (physical, emotional, and
social) delineated by the World Health
Organization (WHO), and well as role (school)
functioning. Items include relationship with peers,
difficulty managing activities of daily living, and
impact of illness on school activities.
Items in the PedsQL Rheumatology Module
3.0 are more specifically related to aspects of
pediatric rheumatic disease (RD), such as the pain
and stiffness associated with joint inflammation,
issues relevant to the multi-component treatment
regimen, and the impact of RD on activities of
daily living.
Developer/contact information. James W. Varni,
PhD, Professor of Architecture and Medicine,
Department of Landscape Architecture and Urban
Planning, College of Archtiecture, Texas A & M
University, 3137 TAMU College Station, TX 77843-
3137. E-mail: jvarni@archone.tamu.edu.
Versions. PedsQL 4.0 Generic Core Scales have
been used internationally and translated into many
languages including Arabic, Spanish, French,
Italian, Dutch, Hebrew, Korean, Vietnamese,
Portuguese, and Swedish. Not all language
translations have been validated. The PedsQL 3.0
Degotardi
Rheumatology Module has been translated into
Spanish and German.
The PedsQL 4.0 consists of developmentally
appropriate forms for children ages 2– 4, 5–7, 8 –
12, and 13–18 years. Child self-report is measured
in children ages 5–18 years. Parent-proxy report
(for children ages 2–18 years) is designed to assess
the parent’s perceptions of their child’s HRQOL.
Parent Report for toddlers (2– 4 years) does not
include the worry and communication scales and
items pertaining to school functioning, as these
constructs were deemed inappropriate for this
early developmental stage.
Essentially, the content and wording of these
parallel forms is identical. However, the child
forms use developmentally appropriate language to
allow for differences in cognitive abilities between
age groups. In the parent-proxy form the language
is changed from first- to third-person tense.
Number of items in scale. There are 45 items in
the PedsQL Measurement Model, including 23
items in the PedsQL 4.0 Generic Core Scales, and
22 items in the PedsQL 3.0 Rheumatology Module.
Subscales. There are 4 subscales of the PedsQL
4.0 Generic Core Scales: Physical functioning (8
items), Emotional functioning (5 items), Social
functioning (5 items), and School functioning (5
items).
There are 5 subscales of the PedsQL 3.0
Rheumatology Module: Pain and hurt (4 items),
Daily activities (5 items), Treatment (7 items),
Worry (3 items), and Communication (3 items).
Populations. Developmental/target. Children
with chronic illness, specifically rheumatic
disease. PedsQL can be used as a measure of the
child’s health-related quality of life in clinical
trials, and for group comparisons.
Other uses. PedsQL can also be used to enhance
clinical decision-making and as a screening tool for
“at risk” chronically ill children. In a study of 127
children with rheumatic disease (2), pediatric
rheumatologists consulted the patient’s scores on
the PedsQL following their routine examination of
the child noting scores of “3” or “4” that indicated
problematic areas. These issues were discussed
and dealt with during the visit, and included
referrals to other health team members (e.g., social
worker). Children subsequently reported improved
quality of life.
WHO ICF Components. Body function,
Impairment, Activity limitation, Participation
restriction; Environmental factor.
Pediatric Quality of Life
Administration
Method. Self-administered questionnaire
completed by children (ages 5–18 years) and/or the
parent. It is important to obtain the parent’s and
the child’s individual perspectives; therefore, they
should complete the questionnaires independently.
Using this method good parent-child concordance
is reported, ranging from 0.29 for communication,
to 0.74 for pain and hurt (1). With younger
children, either the parent may complete the scale
or the administrator may read aloud all items and
responses, and mark the child’s choices.
Other methods of administration include
telephone (3); and group administration of the
PedsQL 4.0 Generic Core Scales in several school
districts nationwide, as well as by State
Departments of Health.
The PedsQL is simple to administer. Children
are instructed to indicate, using a 5-point Likert
scale, how much of a problem each item has been
doing the past month. Younger children (ages 5–7)
use a simplified 3-point Likert scale.
Training. Minimal training is needed to
administer the scales.
Time to administer/complete. Both the PedsQL
4.0 Generic Core Scales and the PedsQL3.0
Rheumatology Module can be completed in
approximately 15 minutes for child self-report, and
10 minutes for parent proxy-report (1).
The PedsQL 4.0 Generic Core Scales alone can
be completed in less than 4 minutes. It can be
administered to large groups (e.g., in a classroom),
or it can be individually administered prior to a
clinic visit.
Equipment needed. Pen and paper, and solid
writing surface.
Cost/availability. Free for non-funded academic
research. A cost structure, including access fees
(Dr. Varni $500, and Mapi Research Institute $155)
is implemented for funded research. Additional
fees are charged for different versions of the scales
(approximately $40 each). Information regarding
specific costs and the user licensing agreement is
available on the following websites
http://www.pedsql.org, or http://www.qolid.org, or
E-mail canfray@mapi.fr.
Scoring
Responses. Scale. Children indicate how often
each particular item has been a problem for them
in the past month using a 5-point Likert scale.
Each item is scored from 0 to 4 (“never a problem”
S109
to “almost always a problem”), with higher ratings
indicating worst function.
Younger children (ages ⱖ5 use a simplified
3-point Likert scale (“not at all a problem,” to “a
lot of a problem”).
Score range. The range is 0 –100, with higher
scores indicating better HRQOL.
Interpretation of scores. No cutoffs. Higher
scores indicate better quality of life.
Method of scoring. PedsQ 4.0 Generic Core
Scales are relatively easy to score. The items of the
4 subscales (Physical Functioning, Emotional
Functioning, Social functioning, School
Functioning) are grouped together on the
questionnaire, making it easier to compute scale
scores. Items are reversed scored and linearly
transformed into a 0 –100 scale, with higher scores
indicating better HRQOL. To reverse score, the 0 –
4 scale items are transformed as follows: 0 ⫽ 100,
1 ⫽ 75, 2 ⫽ 50, 3 ⫽ 25, and 4 ⫽ 0.
Scale Scores are computed as the sum of the
items divided by the number of items answered
(thus, accounting for missing data). If more than
50% of the items are missing, Scale Score should
not be computed. To create the Psychosocial
Health Summary Score the average of the 15 items
comprising emotional, social, and school
functioning are computed. The Physical Health
Summary Score is the mean of the 8 physical
functioning items. To create the Total Scale Score
all 23 item scores are summed, and the mean is
calculated.
PedsQL 3.0 Rheumatology Module is scored
in a similar manner. Means (range 0 –100) are
calculated for each of the 5 subscales (Pain and
Hurt, Daily Activities, Treatment, Worry,
Communication).
Time to score. Approximately 10 to 15 minutes.
Training to score. Minimal training to hand
score. Alternatively can use computer algorithm to
score.
Training to interpret. Easily interpreted. Higher
scores indicate better quality of life.
Norms available. Norms are available. Varni et
al (1) compared for 231 children with rheumatic
disease and 401 healthy children. Differences were
found on the self-report Total Scores (M ⫽ 72.1
and M ⫽ 83.0 respectively), and all the subscales.
S110
Psychometric Information
Reliability. Internal consistency. A recent study
of 231 children and 244 parents (1) reported high
internal consistency reliability for the PedsQL 4.0
Generic Core Scales (ranging from ␣ ⫽ 0.93 for
parent-proxy report of the Total Scale Score to ␣ ⫽
0.86 for child self-report of the Psychosocial Health
Summary Score). Not surprisingly, reliability was
lowest for the self-report of young children (ages
5–7). These findings replicate those of previous
studies (3,4).
The Rheumatology Module also demonstrated
acceptable (albeit slightly lower) reliability with ␣
ranging from 0.75 to 0.86 for child self-report, and
from 0.82 to 0.91 for parent-proxy report.
A full range for item responses was found,
with item distributions tending to be skewed
towards higher HRQOL. As expected, the ceiling
effect was most apparent for healthy children (3).
Test-retest reliability. Not applicable. The
PedsQL is designed to be sensitive to clinically
significant changes in health status.
Validity. Content validity. Items were originally
generated based on literature reviews. The item
pool was further refined following in-depth
interviews with patients and families. Consultation
with health professionals (medical specialists,
nurses, psychologists) confirmed the suitability of
items for inclusion, and established face and
content validity (4). All items included in the
instrument were subsequently field tested in the
target patient population,
Construct validity. This construct was assessed
by examining the correlations between scores on
the PedsQL and indicators of illness burden and
morbidity (3). Small to medium correlations were
reported between scores on the PedsQL and
number of school days missed, and the number of
days the child needed care. Medium to large
correlations were demonstrated between scores on
the PedsQL and the extent to which parents
reported their child’s health interfered with their
daily routine and ability to concentrate at work.
Factor analysis resulted in a 5-factor solution
for self-report and parent-report accounting for
52% and 62% of the variance, respectively (3).
Essentially the factors that emerged were
consistent with the sub-scales of the PedsQL,
except for school functioning which split into 2
different factors. When a 2-factor solution was
forced, 19 of the 23 items loaded on the a priori
Physical Health and Psychosocial Health Summary
Scores.
Degotardi
The PedsQL 4.0 Generic Core Scales have
been shown to distinguish between healthy
children and those with either a chronic or an
acute health condition (3). Additionally, Varni et al
(1) demonstrated that the PedsQL distinguished
between healthy children and those with
rheumatic disease, and also between children with
different rheumatic diseases. Not surprisingly,
children with fibromyalgia consistently reported
significantly lower HRQOL on all dimensions
(including physical health, psychosocial health,
pain, school functioning) than children with JRA,
diabetes, systemic lupus erythematosus, or
spondyloarthropathies.
Convergent and discriminant validity. These
were demonstrated by the multitrait-multimethod.
As expected heterotrait-heteromethod correlations
were lower than either heterotrait-monomethod
correlations (medium to large effect size) or
monotrait-heteromethod correlations (medium to
large effect size) (See reference 3 for the
intercorrelations between and among PedsQL
Subscales).
Sensitivity/responsiveness to change. Responsive-
ness was demonstrated through patient
improvement in PedQL scores following initiation
of treatment at the child’s first clinic visit. As
expected, by the third clinic visit children showed
improvements in HRQOL, especially in physical
health, psychosocial health, pain and hurt, and
worry (2).
Comments and Critique
The PedsQL Measurement Model is
multidimensional, combining the clinical utility
and sensitivity of a rheumatology-specific module,
and the applicability of generic core scales across
disease groups and healthy populations. It allows
comparison of quality of life between children
diagnosed with rheumatic diseases, and children
with other chronic conditions (e.g., cancer, asthma,
diabetes). It is brief and practical to administer to
either large groups, or to individual patients prior
to clinical examination. The PedsQL can be used
as a measure of children’s health-related quality of
life in clinical trials, and also to enhance clinical
decision making and as a screening tool for “at
risk” chronically ill children.
The Peds QL is developmentally appropriate
and sensitive to age-related changes in cognitive
ability. However, the similarity of wording and
content across parallel forms facilitates the
evaluation of differences in HRQOL across and
between age groups, and allows for longitudinal
Pediatric Quality of Life
tracking of quality of life for chronically ill
children. Overall, the PedsQL is a carefully
developed instrument with good psychometric
properties. It has been extensively tested
(nationally and internationally) and has been
translated into many languages.
References
1. (Original) Varni JW, Seid M, Knight TS, Burwinkle T,
Brown J, Szer IS. The PedsQLTM in Pediatric
Rheumatology: Reliability, validity, and
responsiveness of the Pediatric Quality of Life
InventoryTM generic core scales and rheumatology
module. Arthritis Rheum 2002;46:714 –25.
2. Varni JW, Seid M, Knight TS, Uzark, K, Szer IS. The
PedsQLTM 4.0 Generic Core Scales: Sensitivity,
responsiveness and impact on clinical decision-
making. J Behav Med 2002;25:175–93.
3. Varni JW, Seid M, Kurtin PS. The PedsQLTM 4.0:
Reliability and validity of the Pediatric Quality of Life
S111
InventoryTM Version 4.0 Generic Score Scales in
healthy and patient populations. Med Care 2001;39:
800 –12.
4. Varni JW, Seid M, Rode CA. The PedsQLTM:
Measurement model for the Pediatric Quality of Life
Inventory. Med Care 1999;37:126 –39.
Additional References
Eiser C, Morse R. A review of measures of quality of life
for children with chronic illness. Arch Dis Child
2001;84:205–11.
Eiser C, Morse R. The measurement of quality of life in
children: past and future perspectives. J Dev Behav
Pediatr 2001;22:248 –56.
Feldman BM, Grundland B, McCullough L, Wright V.
Distinction of quality of life, heath related quality
of life, and health status in children referred for
rheumatologic care. J Rheumatol 2000;27:226 –33.
Tucker LB. Whose life is it anyway? Understanding
quality of life in children with rheumatic diseases.
J Rheumatol 2000;27:8 –11.
 S112

Summary Table of Pediatric Quality of Life Measures*

Psychometric properties
Response Method of Time for Validated
Measure/scale Content Measure outputs Number of items format administration administration populations Reliability Validity Responsiveness

Juvenile Several Gross Motor, Fine

74 total. 7-point Likert Self-report 20 minutes Children Not noted Good Excellent
Arthritis domains of Motor, and Subscales: Gross scale. Scores (and/or parent- initially, 5 (2–18 years)
Quality of health-related Psycho-social Motor function range from 0 report) minutes subse- with JRA or
Life Question- quality of life, Function; General
(17 items), Fine to 7 for each questionnaire quently JSpA,
naire (JAQQ) including Symptoms; Pain. Motor function subscale. French,
physical and (16 items), Higher scores English and
emotional Psycho-social ⫽ greater Dutch
well-being, function (22 dysfunction) versions
and pain. items), General
Symptoms (19
items, Pain (100
mm VAS).
Pediatric Several PedsQL Generic 45 total. 5-point Likert Self-report 10–15 minutes Children Excellent Excellent Good
Quality of domains of Core Scale: Subscales: scale. Item (and/or parent- (2–18 years)
Life (PedsQL) health-related Psycho-social Physical scores are report) with
quality of life Health Summary functioning (8 reversed and questionnaire rheumatic
including Score (emotional, items), transformed disease.
physical, social, and school Emotional to 0–100 Several
emotional, functioning), and functioning (5 scale (higher languages,
social and Physical Health items), Social scores ⫽ best including
school Summary Score. functioning (5 quality of French,
functioning. PedsQL items), School life) Spanish
Additionally, Rheumatology functioning (5 (not all are
the Module: Pain and items), Pain and validated).
Rheumatology Hurt, Daily Hurt (4 items),
module Activities, Daily Activities
assesses the Treatment, (5 items),
impact of Worry, Treatment (7
joint Communication items), Worry (3
inflammation, items),
and treatment Communication
on activities (3 items)
of daily
living.

*JRA ⫽ juvenile rheumatoid arthritis; JSpA ⫽ juvenile spondyloarthritides; VAS ⫽ visual analog scale.
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