Hearing the Voices
of the Children
Measuring Pediatric Health-Related
Quality of Life from the Perspective of
the Children and Their Parents
Quantifying the Qualitative
James W. Varni, Ph.D.
Texas A&M University
1
World Health Organization Definition
“Health as a state of complete
physical, mental, and social wellbeing, and not merely the absence
of disease or infirmity.”
- World Health Organization (1948)
2
Quality of Life Measurements

In recent years, Quality of Life (QOL)
measurement has emerged as an
important health outcome in clinical
trials, clinical practice improvement
strategies, and healthcare services
research and evaluation
3
Use of QOL assessments


Utilizing QOL assessments in the clinical setting can
facilitate physician-patient communication and
identify “hidden morbidities,” or physical and
psychosocial functioning deficits in individual patients
that might otherwise go under-identified.
Results of such assessment may indicate problem
areas that need to be further explored and can aid a
physician or other healthcare professional in
designing treatment interventions and/or making the
appropriate referrals
4
Pediatric QOL measurement


Prediction of pediatric risk and future
resource utilization may assist in proactive
targeting of healthcare resources to minimize
morbidity and associated costs.
Serial QOL screenings integrated into
standard clinical practice may increase the
probability that pediatric patients can be
managed with optimal QOL.
5
The PedsQL™
Pediatric Quality of Life Inventory™



Pediatric Health-Related Quality of Life
Measurement Experiences with 18,792
Healthy and Ill Children and
Adolescents and Their Parents:
Child Self-Report (N = 11,355 )
Parent Proxy-Report (N = 18,617)
6
The PedsQL™

Measures Child’s and Parent’s
Perceptions of Child’s Health-Related
Quality of Life

Child Self-Report: Ages 5-18

Parent Proxy-Report: Ages 2-18
7
The PedsQL™ Instructions
(Child Report)

Standard Version


In the past ONE month, how much of a
problem has this been for you …
Acute Version

In the past 7 days, how much of a problem
has this been for you …
8
The PedsQL™ Instructions
(Parent Report)

Standard Version


In the past ONE month, how much of a
problem has your child had with …
Acute Version

In the past 7 days, how much of a problem
has your child had with …
9
Scaling (0-4)





Never
Almost Never
Sometimes
Often
Almost Always
0
1
2
3
4

Reverse Scored to 0-100 Scale

100 Representing Higher HRQOL
10
23 Items

Approx. 5 minutes to complete

4 domains:




Physical Functioning (8 items)
Emotional Functioning (5 items)
Social Functioning (5 items)
School Functioning (5 items)
11
Sample Subscale Items

Physical Functioning


Emotional Functioning


I feel sad or blue
Social Functioning


It is hard for me to walk more than one block
I have trouble getting along with other kids
School Functioning

I have trouble keeping up with my schoolwork
12
PedsQL™ Sample
In the past ONE month, how much of a problem has this been for you …
ID# ____________
Date:________
PedsQL
™
Pediatric Quality of Life
Inventory
Version 4.0
CHILD REPORT (ages 8-12)
About My Health and Activities (problems with…)
Ne
1. It is hard for me to walk more than one block
0
A
l
1
2
3
4
2. It is hard for me to run
0
1
2
3
4
3. It is hard for me to do sports activity or exercise
0
1
2
3
4
4. It is hard for me to lift something heavy
0
1
2
3
4
5. It is hard for me to take a bath or shower by myself
0
1
2
3
4
6. It is hard for me to do chores around the house
0
1
2
3
4
7. I hurt or ache
0
1
2
3
4
8. I have low energy
0
1
2
3
4
About My Feelings (problems with…)
Ne
S
S
O
O
Al
Al
1. I feel afraid or scared
0
A
l
1
2
3
4
2. I feel sad or blue
0
1
2
3
4
3. I feel angry
0
1
2
3
4
4. I have trouble sleeping
0
1
2
3
4
5. I worry about what will happen to me
0
1
2
3
4
DIRECTIONS
How I Get Along with Others (problems with…)
On the following page is a list of things that might be a problem for you.
Please tell us how much of a problem each one has been for you
during the past ONE month by circling:
0 if it is never a problem
1 if it is almost never a problem
2 if it is sometimes a problem
3 if it is often a problem
4 if it is almost always a problem
There are no right or wrong answers.
If you do not understand a question, please ask for help.
Ne
S
O
Al
1. I have trouble getting along with other kids
0
A
l
1
2
3
4
2. Other kids do not want to be my friend
0
1
2
3
4
3. Other kids tease me
0
1
2
3
4
4. I cannot do things that other kids my age can do
0
1
2
3
4
5. It is hard to keep up when I play with other kids
0
1
2
3
4
About School (problems with…)
Ne
1. It is hard to pay attention in class
0
A
l
1
2. I forget things
0
3. I have trouble keeping up with my schoolwork
S
O
Al
2
3
4
1
2
3
4
0
1
2
3
4
4. I miss school because of not feeling well
0
1
2
3
4
5. I miss school to go to the doctor or hospital
0
1
2
3
4
13
The PedsQL™ Generic Core


Total Scale Score
Two Summary Scores



Physical Health
Psychosocial Health
Three domains within
Psychosocial Health



Emotional Functioning
Social Functioning
School Functioning
Total
Physical
Emotional
Psychosocial
Social
School
14
PedsQL™ Disease and
Condition Specific Modules







Asthma
Arthritis/Rheumatology
Cancer
Diabetes
Cardiac
Multidimensional Fatigue Scale
Cerebral Palsy, Brain Tumor, End-Stage Renal
Disease, Solid Organ Transplant and other
modules under development
15
Internal Consistency Reliability:
Healthy Children (N= 16,417)
Scale
2-4
5-7
8-12
13-18
Total
Total
NA
0.86
0.90
0.91
0.89
Physical
NA
0.71
0.80
0.85
0.80
Psychosocial
NA
0.83
0.87
0.87
0.86
Total
0.92
0.90
0.92
0.93
0.92*
Physical
0.85
0.89
0.89
0.89
0.89
Psychosocial
0.86
0.85
0.88
0.89
0.88*
Child Self-Report
Parent Proxy-Report
Reliability is strong for all age groups; 0.70 is standard for group comparisons
* Includes only 5-18 data, as School Functioning scale for 2-4 has only 3 items
16
Internal Consistency Reliability:
Children with Chronic Health
Conditions (N = 1,732)
Scale
2-4
5-7
8-12
13-18
Total
Total
NA
0.86
0.89
0.90
0.89
Physical
NA
0.75
0.79
0.84
0.80
Psychosocial
NA
0.81
0.86
0.88
0.86
Total
0.90
0.90
0.90
0.89
0.90*
Physical
0.86
0.87
0.88
0.86
0.87
Psychosocial
0.80
0.86
0.86
0.89
0.86*
Child Self-Report
Parent Proxy-Report
Reliability is strong for all age groups; 0.70 is standard for group comparisons
* Includes only 5-18 data, as School Functioning scale for 2-4 has only 3 items
17
Healthy Children and Children
with Chronic Health Conditions
Child Self-Report
85
Chronic
Healthy
80
Chronic < healthy
(p<.001 on all scales)
75
70
65
Total
Physical
Psychosocial
18
Healthy Children and Children
with Chronic Health Conditions
Parent Proxy-Report
85
Chronic
Healthy
80
Chronic < healthy
(p<.001 on all scales)
75
70
65
Total
Physical
Psychosocial
19
Comparisons Across Chronic
Health Conditions- Child Report
85
80
75
70
65
60
Total
Physical
Psychosocial
Healthy
Diabetes
Cardiac
Asthma
ESRD
Cancer
Rheumatology
CP
20
Comparisons Across Chronic
Health Conditions- Parent Report
85
80
75
70
65
60
55
50
45
40
Total
Physical
Psychosocial
Healthy
Diabetes
Cardiac
Asthma
ESRD
Cancer
Rheumatology
CP
21
Sensitivity of the PedsQL™:
ESRD Treatment Type
Child Self-Report
85
p<.01
p<.05
Parent Proxy-Report
85
p<.01
p<.05
80
80
75
75
70
70
65
65
60
Total
Dialysis
Physical
Psychosocial
Transplant
60
p<.01
Total
Dialysis
p<.01
Physical
Psychosocial
Transplant
22
Sensitivity of the PedsQL™:
Cancer Treatment Type
Child Self-Report
Parent Proxy-Report
85
85
a<c***
80
a<c**
80
a<c*
75
75
70
70
65
65
60
Total
On Tx (a)
Physical
Off < 12 Mo. (b)
Psychosocial
Off Long Term (c )
60
Total
On Tx (a)
* p<.05, **p<.01, *** p<.001
a<c**
Physical
Off < 12 Mo. (b)
Psychosocial
Off Long Term (c )
23
Sensitivity of the PedsQL™:
Rheumatic Diagnostic Groups
Child Self-Report
80 a<b,c,d***
a<b,c,d***
Parent Proxy-Report
a<b,c,d***
80
a<b**
a<c,d***
a<b**
75
75
70
70
65
65
60
60
55
55
50
50
a<b*
45
45
a<c,d***
40
Total
FMS (a)
Physical
DMS (b)
Psychosocial
JRA (c )
SLE (d)
40
a<c,d***
Total
FMS (a)
Physical
DMS (b)
Psychosocial
JRA (c )
*p<.05, **p<.01,*** p<.001; FMS = Fibromyalgia, DMS = Dermatomyositis,
JRA = Juvenile Rheumatoid Arthritis, SLE = Systemic Lupus Erythematosus
SLE (d)
24
Sensitivity of the PedsQL™:
Diabetes Type
Child Self-Report
90
85
Parent Proxy-Report
90
85
p<.05
p<.01
80
80
75
75
70
70
65
Total
Type 1
Physical
Psychosocial
Type 2
65
Total
Type 1
Physical
Psychosocial
Type 2
25
Sensitivity of the PedsQL™:
Weight Status
Child Self-Report
Parent Proxy-Report
90
90
85
85
80
80
75
75
70
70
65
65
60
Total
Physical
Not overweight
Obese
Psychosocial
Overweight
Severely Obese
P<.001 for Total & Physical
60
Total
Physical
Not overweight
Obese
Psychosocial
Overweight
Severely Obese
P<.001 for Total & Physical
Note: group differences do not include severely obese
26
Sensitivity of the PedsQL™:
Cardiac Severity
Parent Proxy-Report
Child Self-Report
95
95
90
90
1> 2,4 *
85
85
80
80
75
75
70
70
65
65
60
Total
NYHA 1
NYHA 3
Physical
Psychosocial
60
NYHA 2
NYHA 4
1> 2,3 *
1> 2,3 *
1> 4***
2,3> 4*
2> 4*
Total
NYHA 1
NYHA 3
* p<.05, *** p<.001
1> 4***
1> 4 ***
Physical
Psychosocial
NYHA 2
NYHA 4
27
Sensitivity of the PedsQL™:
Cerebral Palsy Diagnostic Groups
Child Self-Report
c<a***
80
c<a,b***
c<b**
75
Parent Proxy-Report
c<a**
80
c<b***
75
70
70
65
65
60
60
55
55
50
50
45
45
40
Total
Hemiplegia (a)
Physical
Diplegia (b)
c<a,b***
c<a,b***
40
Psychosocial
Quadriplegia ( c)
c<a,b*
Total
Hemiplegia (a)
**p<.01, *** p<.001
Physical
Diplegia (b)
Psychosocial
Quadriplegia ( c)
28
Responsiveness of the PedsQL™:
Rheumatology Sample
Child Self-Report
85
Parent Proxy-Report
80
80
75
75
70
70
65
65
60
Time 1
Total
Time 2
Physical
Time 3
Psychosocial
Time 1<Time 2**, Time 1<Time 3*** for all scales
60
Time 1
Total
Time 2
Physical
Time 3
Psychosocial
Time 1<Time 2, Time 3** for all scales
29
Parent-Child Concordance
Sample
Total
Physical
Psychosocial
Healthy
0.54
0.44
0.56
Chronic
0.61
0.54
0.61
Asthma
0.62
0.53
0.61
Cancer
0.56
0.57
0.49
Cardiac
0.59
0.59
0.55
Cerebral Palsy
0.40
0.57
0.20
Diabetes
0.45
0.37
0.46
ESRD
0.64
0.67
0.55
Rheumatology
0.74
0.76
0.65
(NS)
All correlations are significant (p<.001) unless noted (NS = not significant)
30
Healthcare Costs by Chronicity
% of cost
Percent of cost at each follow-up period, by PedsQL™ Physical Function
quintile and chronic condition status
Lowest Quintile
(N = 51)
2nd Quintile
(N = 45)
3rd Quintile
(N = 48)
4th/5th Quintile
(N = 99)
Chronic Condition
Chronic Condition
Chronic Condition
Chronic Condition
Yes
No
Yes
No
Yes
No
Yes
No
6
months
37.43*
9.35
26.76
9.30
0.33
6.95
7.59
2.30
12
months
59.16*
4.70
20.56
4.54
0.30
3.63
5.25
1.85
24
months
61.74*
3.38
22.06
2.86
0.41
2.64
4.87
2.03
* = high risk group; accounts for 62% of healthcare costs after 24 months, even
though it represents only 8.7% (n = 21) of the total sample (n = 241)
31
Parent proxy PedsQL & Costs



Parent proxy-reported PedsQL™ scores prospectively accounted
for significant variance in healthcare costs at 6, 12, and 24
months. Adjusted regression models that included both
PedsQL™ scores and chronic health condition status accounted
for 10%, 14%, and 21% of the variance in healthcare costs at
6, 12, and 24 months.
Parent proxy-reported PedsQL™ scores and chronic health
condition status together defined a ‘high risk’ group, constituting
8.7% of the sample and accounting for 37%, 59%, and 62% of
healthcare costs at 6, 12, and 24 months.
The high risk group’s per member per month healthcare costs
were, on average, 12 times that of other enrollees’ at 24
months
32
Costs for High and Low-Risk Samples
Total costs, per member costs, and per member per month costs for high
risk* (N = 21) and not high-risk (N = 231) samples
Time Period
Total
Per Member
Per Member Per
Month
High Risk
Not High
Risk
High Risk
Not High
Risk
High Risk
Not High
Risk
6 months
$54,493
$91,484
$2,595
$396
$432
$66
12 months
$203,875
$168,022
$9,708
$727
$809
$61
24 months
$363,822
$330,846
$17,325
$1,432
$722
$60
* High risk defined as parent reported chronic condition and scoring in lowest PedsQL™
quintile
33
Parent proxy Peds QL ™ & Costs


Parent proxy-reported PedsQL™ scores can
be used to prospectively predict healthcare
costs.
When combined with chronic health condition
status, parent proxy-reported PedsQL™
scores can identify an at risk group of
children as candidates for proactive care
coordination and cost containment.
34
Improved Quality of Life


A standardized assessment of patients’
QOL is necessary…
when combined with physician
knowledge of treatment options and
referral sources patient functioning and
quality of life can improve.
35
Future Directions



Integrating Generic and
Condition/Disease Specific Instruments
Item Response Theory Facilitated Items
Computerized Adaptive Testing
36
The End




Please proceed to the post test
Download the post test
Complete the post test
Return the post test to Dr. Oliver
407I TAMUII
37
Post Test Question One
1. Child reported quality of life is lowest
in which of the following diseases?
1.
Diabetes
2.
CP
3.
Cancer
4.
Asthma
38
Post Test Question Two
2. Parent-child concordance in PedsQL
was significant in all diseases except:
1.
Diabetes
2.
CP
3.
Cancer
4.
Asthma
39
Post Test Question Three
3. Children with chronic health conditions
self reported which of the following
QOL functional subscale variables
lowest?
1.
Physical
2.
Psychosocial
40
Thank you
41