Phone Number* must provide value
Do you have Sickle Cell Disease?* must provide value
Yes No Age
in years
1. I feel pain all over my body* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
2. I feel pain in my arms* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
3. I feel pain in my legs* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
4. I feel pain in my stomach* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
5. I feel pain in my chest* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
6. I feel pain in my back* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
7. I have pain every day* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
8. I have pain so much that I need to take medicine* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
9. It is hard for me to do things I usually do get pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
10. I miss school or work when I have pain
* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
12. It is hard for me to run when I have pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
13. It is hard to have fun when I have pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
14. It is hard for me to do what others can do because I might get pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
15. I wake up at night when I have pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
16. It is hard for me to manage my pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
17. I worry that I will have pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
18. I worry that others will not know what to do if I have pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
19. I worry when I am away from home* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
20. I worry I might have to go to the emergency room* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
21. I worry I might have to stay overnight in the hospital* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
22. I worry I might have a stroke* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
23. I worry I might have a crisis* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
24. I feel angry I have sickle cell disease* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
25. I feel angry when I have pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
26. It is hard for me to remember to take my medicine* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
27. I do not like how I feel after I take my medicine* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
28. I do not like the way my medicine tastes* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
29. My medicine makes me sleepy* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
30. I worry about whether my medicine will work* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
31. My medicine does not make me feel better* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
32. It is hard for me to tell others when I am in pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
33. It is hard for me to tell the doctors and nurses how I feel* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
34. It is hard for me to ask the doctors and nurses questions* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
35. It is hard for me when others do not understand about my sickle cell disease* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
36. It is hard for me when others do not understand how much pain I feel* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
37. It is hard for me to tell others I have sickle cell disease* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
38. I was afraid that I will not receive treatment or be able to attend clinic because of COVID-19 restrictions* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
Are you a parent to a Sickle Cell Disease Patient?* must provide value
Yes No How old is your child?
1. Feels pain a lot* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
2. Pain all over his/her body* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
3. Pain in his/her arms* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
4. Pain in his/her legs* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
5. Pain in his/her stomach* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
6. Pain in his/her chest* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
7. Pain in his/her back* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
8. Has pain everyday* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
9. Has so much pain that he/she has to take medicine* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
10. It is hard for him/her to do things because he/she might get pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
11. Misses school or work when he/she has pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
12. It is hard for him/her to run when he/she has pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
13. It is hard for him/her to have fun when having pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
14. It is hard for him/her to take care of himself/herself when he/she has pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
15. It is hard for him/her to do what others can do because he/she might get pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
16. Wakes up at night when he/she has pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
17. It is hard for him/her to manage his/her pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
18. Worries that he/she will have pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
19. Worries that other people will not know what to do if he/she has pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
20. Worries when he/she is away from home* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
21. Worrying he/she might have to go to the emergency room* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
22. Worrying he/she might have to stay overnight in the hospital* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
23. Worrying he/she might have a stroke* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
24. Worries he/she might have a crisis* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
25. Feels angry about having sickle cell disease* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
26. Feels angry when he/she has pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
27. It is hard for him/her to remember to take his/her medicine* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
28. Does not like how he/she feels after taking medicine* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
29. Does not like the way his/her medicine tastes* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
30. The Medicine making him/her sleepy* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
31. Worries about whether his/her medicine will work* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
32. The Medicine not making him/her feel better* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
33. It is hard for him/her to tell others when he/she is in pain* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
34. It is hard for him/her to tell the doctors and nurses how he/she feels* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
35. It is hard for him/her to ask the doctors and nurses questions* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
36. It is hard for him/her when other people do not understand about his/her sickle cell disease* must provide value
Never Some- times Almost Always Never
Some- times
Almost Always
37. It is hard for him/she when others do not understand how much pain he/she feels* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
38. It is hard for him/her to tell others that he/she has sickle cell disease* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
39. We were not able to attend clinic or receive treatment because of COVID-19 restrictions* must provide value
Never Sometimes Almost Always Never
Sometimes
Almost Always
Today D-M-Y