Evaluation of Patient Satisfaction and Experience of Care for Medicare Beneficiaries with ESRD

ESRD Beneficiary Survey
SCREENER - INTRODUCTION
Hello, my name is [INTERVIEWER NAME]. I’m calling on behalf of the Centers for Medicare and
Medicaid Services the Medicare Agency. We’re conducting a survey of people with kidney failure. You
have been selected at random to be included in this important study.
Now I will read you a statement regarding the Paperwork Reduction Act:
According to the Paperwork Reduction Act of 1995, no persons are required to respond to a collection of
information unless it displays a valid OMB control number. The valid OMB control number for this
information collection is XXXX-XXXX. The time required to complete this information collection is
estimated to average 15 minutes per response, including the time to review instructions, search existing
data resources, gather the data needed, and complete and review the information collection. If you have
comments concerning the accuracy of the time estimate(s) or suggestions for improving this form, please
write to: CMS, 7500 Security Boulevard, Attn: PRA Reports Clearance Officer, Mail Stop C4-26-05,
Baltimore, Maryland 21244-1850.
Participation in the study is voluntary and should take about 15 minutes. You may skip any questions you
do not want to answer.
[add confidentiality and privacy statement – nonintrusive]

1a. In the last 3 months have you received dialysis treatment?
1
YES

□
2
□ NO [If NO, SKIP TO END]
-7
□ REFUSED
-8
□ DON’T KNOW

1b. Have you had a kidney transplant since March of 2011?
1
YES [If YES, SKIP TO END]

□
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW

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ESRD Beneficiary Survey
EXTENDED SURVEY
These first questions are about the type of dialysis treatment you get.

2. Where do you currently get your dialysis treatments…

[IF NEEDED: If you get dialysis treatments in more than one setting, please tell us where you
usually get dialysis treatments.] [INSTRUCTIONS TO INTERVIEWER: If respondent says it is
owned by a hospital, but the dialysis center is not located physically within the hospital, it is
still considered at a hospital]
1
At home,

□
2
□ At a dialysis center, or
3
□ At a hospital?
-7
□ REFUSED – SKIP to Q4
-8
□ DON’T KNOW – SKIP to Q4

3. How long have you been getting dialysis treatments at {home/a dialysis center/a hospital}?
Would you say…
1
Less than 3 months,

□
2
□ At least 3 months but less than 1 year,
3
□ At least 1 year but less than 5 years, or
4
□ 5 years or more?
-7
□ REFUSED
-8
□ DON’T KNOW

[PROGRAMMER, IF Q2=1, FILL DISPLAY WITH “home”; IF Q2=2 FILL DISPLAY WITH “a dialysis center”; IF
Q2=3, FILL DISPLAY WITH “a hospital”.]

4. What type of dialysis treatment do you currently get? Hemodialysis through the vein or
peritoneal dialysis through the belly?

□ HEMODIALYSIS
2
□ PERITONEAL DIALYSIS Skip to 6
-7
□ REFUSED
-8
□ DON’T KNOW
1

2

ESRD Beneficiary Survey
5. The dialysis center staff can connect you to the dialysis machine through a graft, fistula,
or catheter. In the last 3 months, which one did they use most often to connect you to
the dialysis machine?

□ GRAFT
2
□ FISTULA
3
□ CATHETER
-7
□ REFUSED
-8
□ DON’T KNOW
1

6. (Old 7) How many hours do your dialysis treatments usually last?
____________

OP1. Please describe your experience with getting your kidney care over the last three
months. [PROGRAMMER NOTE, ASK OF FLAGGED OPEN ENDED CASES ONLY]
7. (Old 14) Now we are going to ask you about your kidney doctors. Your kidney doctors are

the doctors most involved in your dialysis care now. This could include kidney doctors that
you see inside and outside of a clinic, hospital, or dialysis center. In the last 3 months, how
often did your kidney doctors listen carefully to you? Would you say…
1
Never,

□
2
□ Sometimes,
3
□ Usually, or
4
□ Always?
-7
□ REFUSED
-8
□ DON’T KNOW

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ESRD Beneficiary Survey
8. (Old 15) In the last 3 months, how often did your kidney doctors explain things in a way that
was easy to understand? Would you say…
1
Never,

□
2
□ Sometimes,
3
□ Usually, or
4
□ Always?
-7
□ REFUSED
-8
□ DON’T KNOW

9. (Old 16) In the last 3 months, how often did your kidney doctors show respect for what you
had to say?
1
NEVER

□
2
□ SOMETIMES
3
□ USUALLY
4
□ ALWAYS
-7
□ REFUSED
-8
□ DON’T KNOW
10. (Old 17) In the last 3 months, how often did your kidney doctors spend enough time with
you?
1

□ NEVER
2
□ SOMETIMES
3
□ USUALLY
4
□ ALWAYS
-7
□ REFUSED
-8
□ DON’T KNOW

4

ESRD Beneficiary Survey
11. (Old 26) In the last 3 months, did you and your kidney doctors talk about starting or stopping
a prescription medicine?
1
2

YES
NO → If NO, go to Q15

□ REFUSED
-8
□ DON’T KNOW
-7

12. (Old 27) Did you and your kidney doctors talk about the reasons why you might want to take
a prescription medicine?
1
Yes
2
No

□ REFUSED
-8
□ DON’T KNOW
-7

13. (Old 28) Did you and your kidney doctors talk about the reasons why you might not want to
take a prescription medicine?
1
Yes
2
No

□ REFUSED
-8
□ DON’T KNOW
-7

14. (Old 29) When you talked about starting or stopping a prescription medicine, did your kidney
doctors ask what you thought was best for you?
1
YES

□
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW

5

ESRD Beneficiary Survey
15. (Old 30) Using any number from 0 to 10, where 0 is the worst kidney doctors possible and 10
is the best kidney doctors possible, what number would you use to rate the kidney doctors
you have now?
0 Worst kidney doctors possible
1
2
3
4
5
6
7
8
9
10 Best kidney doctors possible

[PROGRAMMER, FILL Q16 IF Q2=1 (HOME DIALYSIS), DO NOT SHOW DISPLAY; IF Q2=2 (DIALYSIS AT A
CENTER) FILL DISPLAY WITH “dialysis center”; IF Q2=3 (DIALYSIS AT A HOSPITAL), FILL DISPLAY WITH
“hospital dialysis center”.]

16. (Old 34) Now we are going to ask you to think about all the people on your kidney care team.
This includes nurses, technicians, and social workers at the [PROGRAMMER PLEASE INCLUDE
DISPLAY FOR -- dialysis center, / hospital dialysis center]. In the last 3 months, how often did
your kidney care team treat you with courtesy and respect? Would you say…
1
Never,

□
2
□ Sometimes,
3
□ Usually, or
4
□ Always?
-7
□ REFUSED
-8
□ DON’T KNOW

6

ESRD Beneficiary Survey
PROGRAMMER BOX 2:
IF Q2=1 (CURRENTLY GETTING DIALYSIS TREATMENT AT HOME) SKIP TO #21
ELSE, GO TO #18.

17. (Old 35) In the last 3 months, how often did your kidney care team spend enough time with
you? Would you say…
1
Never,

□
2
□ Sometimes,
3
□ Usually, or
4
□ Always?
-7
□ REFUSED
-8
□ DON’T KNOW

18. (Old 36) In the last 3 months, how often did your kidney care team make you as comfortable
as possible during dialysis?
1
NEVER

□
2
□ SOMETIMES
3
□ USUALLY
4
□ ALWAYS
-7
□ REFUSED
-8
□ DON’T KNOW

19. (Old 37) In the last 3 months, how often did your kidney care team check you as closely as
you wanted while you were on the dialysis machine?
1
NEVER

□
2
□ SOMETIMES
3
□ USUALLY
4
□ ALWAYS
-7
□ REFUSED
-8
□ DON’T KNOW

7

ESRD Beneficiary Survey
20. (Old 40) Using any number from 0 to 10, where 0 is the worst kidney care team possible and
10 is the best kidney care team possible, what number would you use to rate your kidney
care team?

0 Worst kidney care team possible
1
2
3
4
5
6
7
8
9
10 Best kidney care team possible

21. (Old 22) Are you eligible for a kidney transplant?

□ YES  If YES go to Q24
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW
1

22. (Old 23) In the last 3 months, did your kidney doctors or anyone on your kidney care team
explain why you are not eligible for a kidney transplant?

□ YES
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW
1

23. (Old 24) In the last 3 months, did your kidney doctors or anyone on your kidney care team
talk with you as much as you wanted about a kidney transplant?
1
YES
2
NO

□ REFUSED
-8
□ DON’T KNOW
-7

8

ESRD Beneficiary Survey
24. (Old 25) Peritoneal dialysis is dialysis given through the belly and is usually done at home. In
the last 3 months, did your kidney doctors or anyone on your kidney care team talk with you
as much as you wanted about peritoneal dialysis?
1
YES
2
NO

□ REFUSED
-8
□ DON’T KNOW
-7

25. (Old 44) In the last 3 months, did your kidney doctors or anyone on your kidney care team
talk to you about what you should eat and drink?
1
YES

□
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW

26. (Old 46) In the last 3 months, did your kidney doctors or anyone on your kidney care team
work with you to set specific goals for managing your health?
1
YES

□
2
□ NO  If NO go to Q28
-7
□ REFUSED
-8
□ DON’T KNOW

27. (Added question) In the last 3 months, did your kidney doctors or anyone on your kidney
care team offer you help to reach these goals?

□ YES
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW
1

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ESRD Beneficiary Survey
28. (Old 47) In the last 3 months, did your kidney doctors or anyone on your kidney care team
ask you about your mental or emotional health?
1
YES

□
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW

29. (Old 60) In the last 3 months, did your kidney doctors or anyone on your kidney care team
ask you about how your kidney disease affects other parts of your life?
1
YES

□
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW

OP2. Thinking about your experience with your kidney doctors and your kidney care team,
please describe the care you received over the last three months. [PROGRAMMER NOTE, ASK
OF FLAGGED OPEN ENDED CASES ONLY]
Now we are going to ask you about how much your health affects other parts of your life and daily
activities. Some people are bothered by the effects of kidney disease on their daily life, while others
are not. How much does kidney disease bother you in each of the following areas?

30. (Old 62) In the last 3 months, how often have you been bothered by fluid restrictions? Would
you say…
1
Never,

□
2
□ Sometimes,
3
□ Usually, or
4
□ Always?
-7
□ REFUSED
-8
□ DON’T KNOW

10

ESRD Beneficiary Survey
31. (Old 63) In the last 3 months, how often have you been bothered by dietary restrictions?
Would you say…
1
Never,

□
2
□ Sometimes,
3
□ Usually, or
4
□ Always?
-7
□ REFUSED
-8
□ DON’T KNOW
32. (Old 70) In the last 3 months how often have you felt downhearted and blue?

□ NEVER
2
□ SOMETIMES
3
□ USUALLY
4
□ ALWAYS
-7
□ REFUSED
-8
□ DON’T KNOW
1

33. (Old 92) In the last 3 months, how many days total did you stay in any hospital overnight?
_________days

34. (Old 93) Excluding scheduled treatments, tests, or dialysis, in the last 3 months, how many
days total did you receive care at a hospital, but came home the same day?
__________ days

35. (Old 94) In the last 3 months how many dialysis related infections did you have?
__________ infections

OP3. Please describe how your kidney care treatment has affected your overall health?
[PROGRAMMER NOTE, ASK OF FLAGGED OPEN ENDED CASES ONLY]

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ESRD Beneficiary Survey
36. (Old 95) In general, how would you rate your overall physical health? Would you say…

□ Excellent,
2
□ Very good,
3
□ Good,
4
□ Fair, or
5
□ Poor?
-7
□ REFUSED
1

-8

□

DON’T KNOW

37. (Old 96) In general, how would you rate your overall mental or emotional health? Would
you say…
1
Excellent,

□
2
□ Very good,
3
□ Good,
4
□ Fair, or
5
□ Poor?
-7
□ REFUSED
-8
□ DON’T KNOW

12

ESRD Beneficiary Survey
Now we are going to ask you about the insurance you may have and the cost of your dialysis
treatment.

38. (Old 78) Some people who are eligible for Medicare or Medicaid also have another type of
insurance. Do you have any of the following types of health insurance…
[YES/NO/REFUSED/DON’T KNOW TO EACH]
1
Medigap or Medicare Supplement?

□
2
□ Medicare Special Needs Plan?
3
□ Medicare Advantage?
4
□ Insurance through your or your spouse’s employer or former employer?
5
□ Insurance through the VA?
6
□ Insurance that you purchased directly?
7
□ Any other type of health insurance?
39. (Old 80) Are you covered for your prescription drugs through any of the following health
plans?
[YES/NO/REFUSED/DON’T KNOW TO EACH]
1
Medicare Part D [IF NEEDED: The Medicare prescription drug plan]?

□
2
□ Medicaid?
3
□ Low Income Subsidy?
4
□ A private prescription drug plan or any other kind of plan?

40. (OLD 81, 85) In the last 3 months, were you ever worried or concerned about the cost of your
dialysis treatments, tests, or prescription medicines?
1
YES

□
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW

13

ESRD Beneficiary Survey
41. (OLD 82, 86)In the last 3 months, did you and your kidney doctors or anyone on your kidney
care team talk about the cost of your dialysis treatments, tests, or prescription medicines?
1
YES

□
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW

42. (OLD 83, 87) In the last 3 months, did you delay or not get dialysis treatments, tests, or
medicines prescribed for you?
1
YES

□
2
□ NO  If NO, go to #44
-7
□ REFUSED
-8
□ DON’T KNOW

43. (OLD 84, 88) Was cost or lack of insurance a reason why you delayed getting dialysis
treatments, tests, or prescription medicines?
1
YES

□
2
□ NO
-7
□ REFUSED
-8
□ DON’T KNOW

OP4. How have you been impacted by the cost of your kidney care? [PROGRAMMER NOTE,
ASK OF FLAGGED OPEN ENDED CASES ONLY]
The last few questions are about you.

44. (Old 97) Are you of Hispanic or Latino origin or descent?

□ YES, HISPANIC OR LATINO
2
□ NO, NOT HISPANIC OR LATINO
-7
□ REFUSED
-8
□ DON’T KNOW
1

14

ESRD Beneficiary Survey
45. (Old 98) Please tell me which one or more of the following you would use to describe
yourself. Would you describe yourself as…
1
Native Hawaiian or Other Pacific Islander,

□
2
□ American Indian or Alaska Native,
3
□ Asian,
4
□ Black or African American, or
5
□ White?
-7
□ REFUSED
-8
□ DON’T KNOW

46. (Old 99) What is the highest grade or level of school that you have completed?

□ 8TH GRADE OR LESS
2
□ SOME HIGH SCHOOL, BUT DID NOT GRADUATE
3
□ HIGH SCHOOL GRADUATE OR GED
4
□ SOME COLLEGE OR 2-YEAR DEGREE
5
□ 4-YEAR COLLEGE GRADUATE
6
□ MORE THAN 4-YEAR COLLEGE DEGREE
-7
□ REFUSED
-8
□ DON’T KNOW
1

15

ESRD Beneficiary Survey
47. (Old 100) Are you now…

□ married,
2
□ living with a partner in a marriage-like relationship,
3
□ widowed,
4
□ divorced,
5
□ separated, or
6
□ never married?
-7
□ REFUSED
-8
□ DON’T KNOW
1

48. (Old 101) What was your household annual income from all sources before taxes?

□ Less than $10,000
2
□ $10,001 to $20,000
3
□ $20,001 to $30,000
4
□ $30,001 to $40,000
5
□ $40,001 to $50,000
6
□ $50,001 to $60,000
7
□ $60,001 to $70,000
8
□ $70,001 to $80,000
9
□ $80,001 to $90,000
10
□ $90,001 to $100,000
11
□ $100,001 or more
-7
□ REFUSED
-8
□ DON’T KNOW
1

49. (Old 102) Including yourself, how many people living in your household are supported by
your total household income?

______________________ NUMBER OF PEOPLE {Range 1-20}

16

ESRD Beneficiary Survey

THANK YOU FOR TAKING THE TIME TO ANSWER THE END STAGE RENAL MEDICARE BENEFICIARY
SURVEY. IF YOU HAVE ANY QUESTIONS, PLEASE DO NOT HESITATE TO CONTACT US AT [
].
THANK YOU.

17