Form PedsQL

Sickle Cell Disease Treatment Demonstration Program

scell ped surveys

Sickle Cell Treatment Demonstration PedsQL for parents

OMB: 0915-0320

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ID#
__________________________
Date:________________________
_

™

PedsQL

Pediatric Quality of Life
Inventory
Version 4.0

TEEN REPORT (ages 13-18)

DIRECTIONS
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.

PedsQL 4.0 - (13-18)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

PedsQL 2

In the past ONE month, how much of a problem has this been for you …
Never

Almost
Never

Sometimes

Often

Almost
Always

1. It is hard for me to walk more than one block

0

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

Never

Almost
Never

Sometimes

Often

Almost
Always

1. I feel afraid or scared

0

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

Never

Almost
Never

Sometimes

Often

Almost
Always

1. I have trouble getting along with other teens

0

1

2

3

4

2. Other teens do not want to be my friend

0

1

2

3

4

3. Other teens tease me

0

1

2

3

4

4. I cannot do things that other teens my age can do

0

1

2

3

4

5. It is hard to keep up with my peers

0

1

2

3

4

ABOUT SCHOOL (problems with…)

Never

Almost
Never

Sometimes

Often

Almost
Always

1. It is hard to pay attention in class

0

1

2

3

4

2. I forget things

0

1

2

3

4

3. I have trouble keeping up with my schoolwork

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

ABOUT MY HEALTH AND ACTIVITIES (problems with…)

ABOUT MY FEELINGS (problems with…)

HOW I GET ALONG WITH OTHERS (problems with…)

PedsQL 4.0 - (13-18)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

ID#__________________________
Date:________________________

PedsQL

™

Pediatric Quality of Life
Inventory
Version 4.0

PARENT REPORT for TEENS (ages 13-18)

DIRECTIONS
On the following page is a list of things that might be a problem for your teen.
Please tell us how much of a problem each one has been for your teen
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.

PedsQL 4.0 - Parent (13-18)

PedsQL 2

In the past ONE month, how much of a problem has your teen had with …
Never

Almost
Never

Sometimes

Often

Almost
Always

1. Walking more than one block

0

1

2

3

4

2. Running

0

1

2

3

4

3. Participating in sports activity or exercise

0

1

2

3

4

4. Lifting something heavy

0

1

2

3

4

5. Taking a bath or shower by him or herself

0

1

2

3

4

6. Doing chores around the house

0

1

2

3

4

7. Having hurts or aches

0

1

2

3

4

8. Low energy level

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Feeling afraid or scared

0

1

2

3

4

2. Feeling sad or blue

0

1

2

3

4

3. Feeling angry

0

1

2

3

4

4. Trouble sleeping

0

1

2

3

4

5. Worrying about what will happen to him or her

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Getting along with other teens

0

1

2

3

4

2. Other teens not wanting to be his or her friend

0

1

2

3

4

3. Getting teased by other teens

0

1

2

3

4

4. Not able to do things that other teens his or her age can
do
5. Keeping up with other teens

0

1

2

3

4

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Paying attention in class

0

1

2

3

4

2. Forgetting things

0

1

2

3

4

3. Keeping up with schoolwork

0

1

2

3

4

4. Missing school because of not feeling well

0

1

2

3

4

5. Missing school to go to the doctor or hospital

0

1

2

3

4

PHYSICAL FUNCTIONING (problems with…)

EMOTIONAL FUNCTIONING (problems with…)

SOCIAL FUNCTIONING (problems with…)

SCHOOL FUNCTIONING (problems with…)

PedsQL 4.0 - Parent (13-18)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

ID#
__________________________
Date:________________________
_

PedsQL

™

Pediatric Quality of Life
Inventory
Version 4.0

CHILD REPORT (ages 8-12)

DIRECTIONS
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.

PedsQL 4.0 - (8-12)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

PedsQL 2

In the past ONE month, how much of a problem has this been for you …
Never

Almost
Never

Sometimes

Often

Almost
Always

1. It is hard for me to walk more than one block

0

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

Never

Almost
Never

Sometimes

Often

Almost
Always

1. I feel afraid or scared

0

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

Never

Almost
Never

Sometimes

Often

Almost
Always

1. I have trouble getting along with other kids

0

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…)

Never

Almost
Never

Sometimes

Often

Almost
Always

1. It is hard to pay attention in class

0

1

2

3

4

2. I forget things

0

1

2

3

4

3. I have trouble keeping up with my schoolwork

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

ABOUT MY HEALTH AND ACTIVITIES (problems with…)

ABOUT MY FEELINGS (problems with…)

HOW I GET ALONG WITH OTHERS (problems with…)

PedsQL 4.0 - (8-12)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

ID#
__________________________
Date:________________________
_

PedsQL

™

Pediatric Quality of Life
Inventory
Version 4.0

PARENT REPORT for CHILDREN (ages 8-12)

DIRECTIONS
On the following page is a list of things that might be a problem for your child.
Please tell us how much of a problem each one has been for your child
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.

In the past ONE month, how much of a problem has your child had with …
PedsQL 4.0 - Parent (8-12)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

PedsQL 2
Never

Almost
Never

Sometimes

Often

Almost
Always

1. Walking more than one block

0

1

2

3

4

2. Running

0

1

2

3

4

3. Participating in sports activity or exercise

0

1

2

3

4

4. Lifting something heavy

0

1

2

3

4

5. Taking a bath or shower by him or herself

0

1

2

3

4

6. Doing chores around the house

0

1

2

3

4

7. Having hurts or aches

0

1

2

3

4

8. Low energy level

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Feeling afraid or scared

0

1

2

3

4

2. Feeling sad or blue

0

1

2

3

4

3. Feeling angry

0

1

2

3

4

4. Trouble sleeping

0

1

2

3

4

5. Worrying about what will happen to him or her

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Getting along with other children

0

1

2

3

4

2. Other kids not wanting to be his or her friend

0

1

2

3

4

3. Getting teased by other children

0

1

2

3

4

4. Not able to do things that other children his or her
age can do

0

1

2

3

4

5. Keeping up when playing with other children

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Paying attention in class

0

1

2

3

4

2. Forgetting things

0

1

2

3

4

3. Keeping up with schoolwork

0

1

2

3

4

4. Missing school because of not feeling well

0

1

2

3

4

5. Missing school to go to the doctor or hospital

0

1

2

3

4

PHYSICAL FUNCTIONING (problems with…)

EMOTIONAL FUNCTIONING (problems with…)

SOCIAL FUNCTIONING (problems with…)

SCHOOL FUNCTIONING (problems with…)

PedsQL 4.0 - Parent (8-12)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

ID#
__________________________
Date:________________________
_

™

PedsQL

Pediatric Quality of Life
Inventory
Version 4.0
YOUNG CHILD REPORT (ages 5-7)

Instructions for interviewer:
I am going to ask you some questions about things that might be a problem for some
children. I want to know how much of a problem any of these things might be for you.
Show the child the template and point to the responses as you read.
If it is not at all a problem for you, point to the smiling face
If it is sometimes a problem for you, point to the middle face
If it is a problem for you a lot, point to the frowning face
I will read each question. Point to the pictures to show me how much of a problem it is
for you. Let’s try a practice one first.
Not at all
Is it hard for you to snap your fingers

Sometimes

A lot

☺

Ask the child to demonstrate snapping his or her fingers to determine whether or not the
question was answered correctly. Repeat the question if the child demonstrates a response
that is different from his or her action.

PedsQL 4.0 - (5-7)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

PedsQL 2

Think about how you have been doing for the last few weeks. Please listen carefully to
each sentence and tell me how much of a problem this is for you.
After reading the item, gesture to the template. If the child hesitates or does not seem to understand
how to answer, read the response options while pointing at the faces.

PHYSICAL FUNCTIONING (problems with…)
1.
2.
3.
4.
5.
6.
7.
8.

Is it hard for you to walk
Is it hard for you to run
Is it hard for you to play sports or exercise
Is it hard for you to pick up big things
Is it hard for you to take a bath or shower
Is it hard for you to do chores (like pick up your toys)
Do you have hurts or aches (Where?___________ )
Do you ever feel too tired to play

Not
at all

Sometimes

A lot

0
0
0
0
0
0
0
0

2
2
2
2
2
2
2
2

4
4
4
4
4
4
4
4

Remember, tell me how much of a problem this has been for you for the last few weeks.

EMOTIONAL FUNCTIONING (problems with…)
1.
2.
3.
4.
5.

Do you feel scared
Do you feel sad
Do you feel mad
Do you have trouble sleeping
Do you worry about what will happen to you

SOCIAL FUNCTIONING (problems with…)
1.
2.
3.
4.
5.

Is it hard for you to get along with other kids
Do other kids say they do not want to play with you
Do other kids tease you
Can other kids do things that you cannot do
Is it hard for you to keep up when you play with other
kids

SCHOOL FUNCTIONING (problems with…)
1.
2.
3.
4.
5.

Is it hard for you to pay attention in school
Do you forget things
Is it hard to keep up with schoolwork
Do you miss school because of not feeling good
Do you miss school because you have to go to the
doctor’s or hospital

PedsQL 4.0 - (5-7)
01/00

Not to be reproduced without permission

Not
at all

Sometimes

A lot

0
0
0
0
0

2
2
2
2
2

4
4
4
4
4

Not
at all

Sometimes

A lot

0
0
0
0

2
2
2
2

4
4
4
4

0

2

4

Not
at all

Sometimes

A lot

0
0
0
0

2
2
2
2

4
4
4
4

0

2

4

Copyright © 1998 JW Varni, Ph.D. All rights reserved

How much of a problem is this for you?

Not at all

Sometimes

A lot

☺

PedsQL 4.0 - (5-7)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved.

ID#
__________________________
Date:________________________
_

PedsQL

™

Pediatric Quality of Life
Inventory
Version 4.0

PARENT REPORT for YOUNG CHILDREN (ages 5-7)

DIRECTIONS
On the following page is a list of things that might be a problem for your child.
Please tell us how much of a problem each one has been for your child
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.

PedsQL 4.0 - Parent (5-7)
01/00

Not to be reproduced without permission Copyright © 1998 JW Varni, Ph.D. All rights reserved

PedsQL 2

In the past ONE month, how much of a problem has your child had with …
Never

Almost
Never

Sometimes

Often

Almost
Always

1. Walking more than one block

0

1

2

3

4

2. Running

0

1

2

3

4

3. Participating in sports activity or exercise

0

1

2

3

4

4. Lifting something heavy

0

1

2

3

4

5. Taking a bath or shower by him or herself

0

1

2

3

4

6. Doing chores, like picking up his or her toys

0

1

2

3

4

7. Having hurts or aches

0

1

2

3

4

8. Low energy level

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Feeling afraid or scared

0

1

2

3

4

2. Feeling sad or blue

0

1

2

3

4

3. Feeling angry

0

1

2

3

4

4. Trouble sleeping

0

1

2

3

4

5. Worrying about what will happen to him or her

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Getting along with other children

0

1

2

3

4

2. Other kids not wanting to be his or her friend

0

1

2

3

4

3. Getting teased by other children

0

1

2

3

4

0

1

2

3

4

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Paying attention in class

0

1

2

3

4

2. Forgetting things

0

1

2

3

4

3. Keeping up with school activities

0

1

2

3

4

4. Missing school because of not feeling well

0

1

2

3

4

5. Missing school to go to the doctor or hospital

0

1

2

3

4

PHYSICAL FUNCTIONING (problems with…)

EMOTIONAL FUNCTIONING (problems with…)

SOCIAL FUNCTIONING (problems with…)

4. Not able to do things that other children his or
her age can do
5. Keeping up when playing with other children

SCHOOL FUNCTIONING (problems with…)

PedsQL 4.0 - Parent (5-7)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

ID#
__________________________
Date:________________________
_

™

PedsQL

Pediatric Quality of Life
Inventory
Version 4.0

PARENT REPORT for TODDLERS (ages 2-4)

DIRECTIONS
On the following page is a list of things that might be a problem for your child.
Please tell us how much of a problem each one has been for your child
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.

PedsQL 4.0 - Parent (2-4)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved

PedsQL 2

In the past ONE month, how much of a problem has your child had with …
Never

Almost
Never

Sometimes

Often

Almost
Always

1. Walking

0

1

2

3

4

2. Running

0

1

2

3

4

3. Participating in active play or exercise

0

1

2

3

4

4. Lifting something heavy

0

1

2

3

4

5. Bathing

0

1

2

3

4

6. Helping to pick up his or her toys

0

1

2

3

4

7. Having hurts or aches

0

1

2

3

4

8. Low energy level

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Feeling afraid or scared

0

1

2

3

4

2. Feeling sad or blue

0

1

2

3

4

3. Feeling angry

0

1

2

3

4

4. Trouble sleeping

0

1

2

3

4

5. Worrying

0

1

2

3

4

Never

Almost
Never

Sometimes

Often

Almost
Always

1. Playing with other children

0

1

2

3

4

2. Other kids not wanting to play with him or her

0

1

2

3

4

3. Getting teased by other children

0

1

2

3

4

4. Not able to do things that other children his or her
age can do

0

1

2

3

4

5. Keeping up when playing with other children

0

1

2

3

4

Sometimes

Often

Never

Almost
Always

PHYSICAL FUNCTIONING (problems with…)

EMOTIONAL FUNCTIONING (problems with…)

SOCIAL FUNCTIONING (problems with…)

*Please complete this section if your child attends school or daycare
Never Almost
SCHOOL FUNCTIONING (problems with…)
1. Doing the same school activities as peers

0

1

2

3

4

2. Missing school/daycare because of not feeling well

0

1

2

3

4

3. Missing school/daycare to go to the doctor or
hospital

0

1

2

3

4

PedsQL 4.0 – Parent (2-4)
01/00

Not to be reproduced without permission

Copyright © 1998 JW Varni, Ph.D. All rights reserved


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