Supplementary Material 1: CKD-Symptom Burden Index

CKD Symptom Burden Index (CKD-SBI)

Instructions
Below is a list of physical and emotional symptoms that people with chronic kidney disease may have. Read each one carefully. If you have had the
symptom during the past four weeks, let us know how OFTEN you had it, how SEVERE it was usually and how much it DISTRESSED or
BOTHERED you by circling the appropriate number.

During the past 4 week: If YES If YES If YES

Did you experience this How much did it distress or bother you How severe was it usually on a scale of How often did you have it on a scale of 0-
symptom? NO on a scale of 0-10? 0-10? 10?
0 = none 0 = none 0= never
10= very much 10 = very severe 10= constant

1.Constipation NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

2. Nausea NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

3. Vomiting
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10
During the past 4 week: If YES If YES If YES
Did you experience this How much did it distress or bother you How severe was it usually on a scale of How often did you have it on a scale of 0-
symptom? NO on a scale of 0-10? 0-10? 10?
0 = none 0 = none 0= never
10= very much 10 = very severe 10= constant
4. Diarrhoea
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

5. Decreased appetite
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

6. Muscle cramps
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

7. Swelling in legs
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

8. Shortness of breath
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10
During the past 4 week: If YES If YES If YES
Did you experience this How much did it distress or bother you How severe was it usually on a scale of How often did you have it on a scale of 0-
symptom? NO on a scale of 0-10? 0-10? 10?
0 = none 0 = none 0= never
10= very much 10 = very severe 10= constant
9. Light headedness or
dizziness NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

10. Restless legs or

difficulty keeping your NO
legs still
Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

11. Numbness or tingling

in feet NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

12. Feeling tired or lack

of energy NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

13. Cough
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10
During the past 4 week: If YES If YES If YES
Did you experience this How much did it distress or bother you How severe was it usually on a scale of How often did you have it on a scale of 0-
symptom? NO on a scale of 0-10? 0-10? 10?
0 = none 0 = none 0= never
10= very much 10 = very severe 10= constant
14. Dry mouth
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

15. Bone or joint pain

NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

16. Chest pain

NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

17. Headache
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

18. Muscle soreness

NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10
During the past 4 week: If YES If YES If YES
Did you experience this How much did it distress or bother you How severe was it usually on a scale of How often did you have it on a scale of 0-
symptom? NO on a scale of 0-10? 0-10? 10?
0 = none 0 = none 0= never
10= very much 10 = very severe 10= constant
19. Difficulty
concentrating NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

20. Dry skin

NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

21. Itching
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

22. Worrying
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

23. Feeling nervous

NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10
During the past 4 week: If YES If YES If YES
Did you experience this How much did it distress or bother you How severe was it usually on a scale of How often did you have it on a scale of 0-
symptom? NO on a scale of 0-10? 0-10? 10?
0 = none 0 = none 0= never
10= very much 10 = very severe 10= constant
24. Trouble falling
asleep NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

25. Trouble staying

asleep NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

26. Feeling irritable

NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

27. Feeling sad

NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

28. Feeling anxious

NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10
During the past 4 week: If YES If YES If YES
Did you experience this How much did it distress or bother you How severe was it usually on a scale of How often did you have it on a scale of 0-
symptom? NO on a scale of 0-10? 0-10? 10?
0 = none 0 = none 0= never
10= very much 10 = very severe 10= constant

29. Depression NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

30. Decreased interest in

sex NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

31. Difficulty becoming

sexually aroused NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

32. Nocturia
NO

Yes 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10
 If you had any other symptoms during the 4 past weeks, please list below

Other:

_____________________ 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

Other:

_____________________ 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

Other:

_____________________ 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10 0 1 2 3 4 5 6 7 8 9 10

Thank you for participating in this survey.