Protocol - Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me)

Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me)

Answer all the questions by checking the box to the left of your answer.

Emotional Impact

1. In the past 7 days, how often did you feel completely hopeless because of your health?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

2. In the past 7 days, how lonely did you feel because of your health problems?

[ ] Not at all

[ ] A little

[ ] Somewhat

[ ] Quite

[ ] Very

3. In the past 7 days, how depressed were you about your health problems?

[ ] Not at all

[ ] A little

[ ] Somewhat

[ ] Quite

[ ] Very

4. In the past 7 days, how much did you worry about getting sick?

[ ] Not at all

[ ] A little bit

[ ] Somewhat

[ ] Quite a bit

[ ] Very much

5. In the past 7 days, how often were you very worried about needing to go to the hospital?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

Social Functioning Impact

1. In the past 30 days, how much did you rely on others to take care of you because of your health?

[ ] Not at all

[ ] A little bit

[ ] Somewhat

[ ] Quite a bit

[ ] Very much

2. In the past 30 days, how often did your health slow you down?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

3. In the past 30 days, how often did your health make it hard for you to do things?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

4. In the past 30 days, how often did your health keep you from going out?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

5. In the past 30 days, how much did your health make it hard for you to do things with your friends?

[ ] Not at all

[ ] A little bit

[ ] Somewhat

[ ] Quite a bit

[ ] Very much

Sleep Impact

1. In the past 7 days, how often did you stay up most of the night because you could not fall asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

2. In the past 7 days, how often was it very easy for you to fall asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

3. In the past 7 days, how often did you have a lot of trouble falling asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

4. In the past 7 days, how often did you stay up all night because you could not fall asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

5. In the past 7 days, how often did you stay up half of the night because you could not fall asleep?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

Stiffness Impact

1. In the past 7 days, how often were your joints very stiff when you woke up?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

2. In the past 7 days, how often were your joints very stiff during the day?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

3. In the past 7 days, how often were your joints so stiff during the day that you could not move?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

4. In the past 7 days, how often did you wake up so stiff that you could not move?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

5. In the past 7 days, how often did it take you a very long time to get out of bed because of stiffness?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

Pain Impact

1. In the past 7 days, how often did you have pain so bad that you could not do anything for a whole day?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

2. In the past 7 days, how often did you have pain so bad that you could not get out of bed?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

3. In the past 7 days, how often did you have very severe pain?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

4. In the past 7 days, how often did you have pain so bad that you had to stop what you were doing?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

5. In the past 7 days, how often did you have pain so bad that it was hard to finish what you were doing?

[ ] Never

[ ] Rarely

[ ] Sometimes

[ ] Often

[ ] Always

Pain Episodes

1. In the past 12 months, how many sickle cell pain attacks (crises) did you have?

[ ] I did not have a pain attack (crisis) in the past 12 months

[ ] 1

[ ] 2

[ ] 3

[ ] 4 or more

2. When was your last pain attack (crisis)?

[ ] I’ve never had a pain attack (crisis)

[ ] More than 5 years ago

1-5[ ]years ago

7-11[ ]months ago

1-6[ ]months ago

1-3[ ]weeks ago

[ ] Less than a week ago

[ ] I have one right now

3. Using any number from 0 to 10, where 0 is no pain and 10 is the worst pain imaginable, how severe was your pain during your last pain attack (crisis)?

0[ ]No pain

[ ] 1

[ ] 2

[ ] 3

[ ] 4

[ ] 5

[ ] 6

[ ] 7

[ ] 8

[ ] 9

10[ ]Worst pain imaginable

[ ] I’ve never had a pain attack (crisis)

4. How much did your last pain attack (crisis) interfere with your life?

[ ] I’ve never had a pain attack (crisis)

[ ] Not at all, I did everything I usually do

[ ] I had to cut down on some things I usually do

[ ] I could not do most things I usually do

[ ] I could not take care of myself and needed some help from family or friends

[ ] I could not take care of myself and needed constant care from family, friends, doctors, or nurses

5. About how long did your most recent pain attack (crisis) last?

[ ] I’ve never had a pain attack (crisis)

[ ] Less than 1 hour

1-12[ ]hours

13-23[ ]hours

1-3[ ]days

4-6[ ]days

1-2[ ]weeks

[ ] More than 2 weeks

Scoring information is available from Keller S. D., Evensen, C., Yang, M., & Owens, T. (2011). Adult Sickle Cell Quality of Life Measurement Information System user’s manual and interpretation guide. Bethesda, MD: U.S. Department of Health and Human Services, National Institutes of Health, National Heart, Lung and Blood Institute.