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DIRECTIONS
Children with End Stage Renal Disease sometimes have special problems. 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.
In the past ONE month, how much of a problem has this been for you ...
General Fatigue 1. I feel tired
2. I feel physically weak (not strong)
3. I feel too tired to do things that I like to do 4. I feel too tired to spend time with my friends About My Kidney Disease
1. I get swelling in my face 2. I feel dizzy
3. I get headaches 4. I get thirsty
5. I get muscle cramps Treatment Problems
1. It is hard for me to remember to take my medicines 2. I do not like how I feel after I take my medications (adsbygoogle = window.adsbygoogle || []).push({});
3. It is hard for me to drink the amount of fluid I am supposed to 4. I get upset when I cannot eat foods that I want to eat
Family and Peer Interaction
Worry
1. I worry about whether my medical treatments are working 2. I worry about having surgery
3. I worry that I will be sick for a long time 4. I worry that I will have to stay in the hospital 5. I worry about my blood pressure
6. I worry that I will get sick if I do not take my medicines 7. I worry about my weight
8. I worry about getting infections
9. I worry about having needle sticks (ie, injections, blood tests, intravenous infusions)
10. I worry about the results of my blood tests Perceived Physical Appearance
1. I do not like other people to see my scars 2. I do not look as old as other kids my age
3. I am embarrassed that my medicines will change the way I look Communication
1. It is hard for me to tell the doctors and nurses how I feel 2. It is hard for me to ask the doctors and nurses questions
3. It is hard for me to tell other people at the hospital (ie, child life, dietician, social worker) how I feel
4. It is hard for me to explain my illness to other people 5. It is hard for me to tell my parents how I feel
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. General Fatigue
1. Feeling tired
2. Feeling physically weak (not strong)
3. Feeling too tired to do things that he or she likes to do 4. Feeling too tired to spend time with his or her friends* About My Kidney Disease
1. Swelling in his or her face 2. Feeling dizzy*
3. Getting headaches 4. Getting thirsty
5. Getting muscle cramps Treatment Problems
1. Difficulty remembering to take his or her medicines*
2. Not liking how he or she feels after taking his or her medications 3. Difficulty drinking the amount of fluid he or she is supposed to (adsbygoogle = window.adsbygoogle || []).push({});
4. Getting upset when he or she cannot eat foods that he or she wants to eat Family and Peer Interaction
3. Feeling left out of activities with his/her friends because of his/her treatment*
Worry
1. Worrying about whether his or her medical treatments are working* 2. Worrying about having surgery
3. Worrying that he or she will be sick for a long time* 4. Worrying that he or she will have to stay in the hospital 5. Worrying about his or her blood pressure*
6. Worrying that he or she will get sick if he or she does not take his or her medicines*
7. Worrying about his or her weight* 8. Worrying about getting infections*
9. Worrying about having needle sticks (ie, injections, blood tests, intravenous infusions)
10. Worrying about the results of his or her blood tests* Perceived Physical Appearance
1. Not liking other people to see his or her scars* 2. Not looking as old as other kids his or her age*
3. Being embarrassed that his or her medicines will change the way he or she looks*
Communication
1. Difficulty telling the doctors and nurses how he or she feels* 2. Difficulty asking the doctors and nurses questions*
3. Difficulty telling other people at the hospital (ie, child life, dietician, social worker) how he/she feels*
Note: The PedsQL is available at http://www.pedsql.org. *Items not included on parent of toddler (aged 2 to 4 years) module. Reproduced with permission from J.W. Varni, PhD. Copyright © 1998
- Young Children (ages 5-7) - Children (ages 8-12)
- And Teens ages (13-18)
are composed of 34 items comprising 7 dimensions.
DESCRIPTION OF THE END STAGE RENAL DISEASE MODULE:
Dimensions Number of Items Cluster of Items Reversed Scoring Direction of Dimensions General Fatigue 4 1- 4 1- 4 Higher scores indicate lower problems. About My Kidney Disease 5 1- 5 1- 5 Treatment Problems 4 1-4 1-4 Family and Peer Interaction 3 1-3 1-3 Worry 10 1-10 1-10 Perceived Physical Appearance 3 1-3 1-3 Communication 5 1- 5 1-5
3-point scale: 0 (Not at all), 2 (Sometimes) and 4 (A lot) for the Young
Children (ages 5-7) child report
Weighting of Items
no
Extension of the Scoring Scale
Scores are transformed on a scale from 0 to 100.
Scoring Procedure
Step 1: Transform Score
Items are reversed scored and linearly transformed to a 0-100 scale as
follows: 0=100, 1=75, 2=50, 3=25, 4=0. (adsbygoogle = window.adsbygoogle || []).push({});
Step 2: Calculate Scores
Score by Dimensions:
• If more than 50% of the items in the scale are missing, the scale scores
should not be computed,
• Mean score = Sum of the items over the number of items answered.
Total Score: Sum of all the items over the number of items answered on all
the Scales.
Interpretation and Analysis of Missing Data
If more than 50% of the items in the scale are missing, the Scale Scores
should not be computed.
If 50% or more items are completed: Impute the mean of the completed items