Form 1 CLEAN Office of Patient Advocacy Survey OMB revised 12-1

Be The Match^® Patient Support Center Survey

Instructions: You were recently in contact (by phone or email) with Be The Match® Patient Support Center. Please take 5 minutes to complete this survey. Your feedback will help us improve our programs and services for future blood and marrow transplant (BMT) patients and families. Participating in this survey is voluntary. We’ll do everything we can to keep your responses private. We won’t link them to identifying information, such as your name or email address. Your responses won’t affect your relationship with Be The Match. For questions about the survey, call 1-888-999-6743 or email [email protected]

1. What topics did you discuss and/or request information on? Check all that apply.

❒ Caregiver

❒ Clinical trials

❒ Diseases

❒ Financial and insurance issues

❒ Hospital life

❒ How a donor match is found

❒ Life after transplant (survivorship)

❒ Other treatment options (other than transplant)

❒ Peer support (talk to survivor or caregiver)

❒ Risks and benefits of transplant

❒ Transplant centers

❒ Not listed, please describe: ____________

2. Overall, how would you rate your contact with Be The Match Patient Support Center? Check one.

❒ Very Good ❒ Good ❒ Neutral ❒ Poor ❒ Very Poor

Please explain: ________________________________________________________________

We’d like to know how satisfied you were with our services. Tell us how much you agree or disagree with the statements below: Select from 5 for ‘Strongly agree’ to 1 for ‘Strongly disagree’

In general, we were…	Strongly agree	Agree	Neutral	Disagree	Strongly disagree	N/A
Able to answer your questions.	5	4	3	2	1	0
Easy to understand.	5	4	3	2	1	0

We’d also like to know how you felt after our contact. Tell us how much you agree or disagree with the statements below: Select from 5 for ‘Strongly agree’ to 1 for ‘Strongly disagree’

After our contact, I …	Strongly agree	Agree	Neutral	Disagree	Strongly disagree	N/A
Felt more prepared to talk with my (or the patient’s) medical team about BMT.	5	4	3	2	1	0
Felt more informed of other resources that might help me (or the patient) understand BMT.	5	4	3	2	1	0
Didn’t have to wait long for follow-up information.	5	4	3	2	1	0

8. What follow-up actions, if any, did you take after your contact with us? Check all that apply.

❒ Contacted the Patient Support Center

❒ Shared the information with my family

❒ Visited www.bethematch.org/patient

❒ Kept the information as a reference

❒ Contacted other organization(s)

❒ Didn’t do anything with the information

❒ Talked with my doctor about the information

❒ Talked with BMT hospital staff about the information

❒ Not listed, please describe: _____________________________________________________

9. Would you recommend Be The Match Patient Support Center to someone else in your situation?

❒ Yes ❒ Maybe ❒ No ❒ Don’t know

Please explain: ____________________________________________________________

10. Is there anything else you’d like to tell us about our contact (phone or email)?

Please tell us who you are. We’d like to know who filled out this survey. Your responses help us create resources that meet your unique needs. All answers are private to the extent permitted by law.

12. What sex were you assigned at birth, on your original birth certificate?

❒ Male

❒ Female

❒ Refused

❒ Don’t know

13. Do you currently describe yourself as male, female or transgender?

❒ Male

❒ Female

❒ Transgender

❒ None of these

14. Which best describes you:

❒ Transplant patient ❒ Friend (who isn’t the main caregiver)

❒ Main caregiver ❒ Family member (who isn’t the main caregiver)

❒ Not listed, please describe: ____________________________________________________

15. Your age (in years):

❒ 0-13 ❒ 31-40

❒ 14-18 ❒ 41-50

❒ 19-23 ❒ 51-64

❒ 24-30 ❒ 65 and above

16. What is your ethnicity? Check one.

                 ❒ Hispanic or Latino                                      

                 ❒ Not Hispanic or Latino   

17. What is your race? Mark one or more.

❒ American Indian or Alaska Native            

❒ Asian                                                               

❒ Black or African American                          

       ❒ Native Hawaiian or Other Pacific Islander

❒ White              

18. Your highest level of education:

❒ High school ❒ Undergraduate or Bachelors

❒ Associate ❒ Graduate or Doctoral

❒ Not listed, please describe: _____________________________________________________

Thank you! Your feedback helps us make our programs and services as useful as possible for BMT patients and families.

Please return the survey in the enclosed pre-paid envelope or mail to:

Be The Match® Patient Support Center

500 N. 5th Street

Minneapolis, MN 55401-1206

Questions? Contact us at:

Toll free: 1-888-999-6743

Email: [email protected]

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