Form #3 Form #3 Consumer or Patient Questionnaire

Evaluation of ARRA Comparative Effectiveness Research Dissemination Contractor Efforts

Attachment D -- Consumer or Patient Questionnaire

Consumer/Patient Survey

OMB: 0935-0191

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A

Form Approved
OMB No. 0935-XXXX
Exp. Date XX/XX/20XX



HRQ CER Dissemination Evaluation - Consumer Survey


INTRODUCTION



Thank you for taking the time to meet with me today. The Federal Agency for Healthcare Research and Quality has contracted with IMPAQ to design and implement a survey of U.S. consumers. The purpose of the survey is to learn about consumer awareness of scientific research that may help them make medical decisions.


The interview takes about 15-20 minutes to complete. Your participation is voluntary and you may skip any questions you do not want to answer. Your answers will be kept strictly confidential and will be used only for research purposes.


Do you have any questions before we begin?


YES ANSWER ANY QUESTIONS/RESPOND TO CONCERNS AS APPROPRIATE

NO PROCEED WITH INTERVIEW


CONFIDENTIALITY STATEMENT (OMB REQUIRES THIS TO BE READ)


Before we begin, let me assure you that the purpose of this interview is strictly for informational and statistical purposes. The information you provide will help AHRQ to better understand consumer awareness and will aid in designing the survey. Your participation is completely voluntary and you can decline to answer any question at any time. Information related to this study is confidential and will not be released to the public in any way that would allow you to be personally identified except as prescribed under the conditions of the Privacy Act Notice.




Public reporting burden for this collection of information is estimated to average 20 minutes per response, the estimated time required to complete the survey. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to: AHRQ Reports Clearance Officer Attention: PRA, Paperwork Reduction Project (0935-XXXX) AHRQ, 540 Gaither Road, Room # 5036, Rockville, MD 20850.




Part A. Awareness - PCOR Unaided Awareness


Introduction: There are a many ways to treat most medical illnesses and conditions. Different treatment options have different levels of benefits and risks of side effects, as well as costs.


Q1. Have you heard of comparing treatments with your clinician to decide what healthcare options will work best for you?


____ YES

____ NO

____ DON’T KNOW


Q2. Have you heard about research that can help you compare treatment choices?


____ YES

____ NO SKIP Part B intro

____ DON’T KNOW SKIP TO Part B intro


Q3. Is there a name that you have heard this research called?


RESPONDENT’S UNPROMPTED ANSWER MUST MATCH ONE OF FIRST THREE RESPONSE CATEGORIES; OTHERWISE CODE AS “OTHER” OR DON’T KNOW.” PROCEED TO QUESTION 4. IF THE RESPONDENT ANSWERS “DON’T KNOW,” ACKNOWLEDGE CORRECT ANSWER: “THIS RESEARCH IS CALLED PATIENT CENTERED OUTCOMES RESEARCH.”


____ COMPARATIVE EFFECTIVENESS RESEARCH

____ SHARED-DECISION MAKING

____ PATIENT CENTERED OUTCOMES RESEARCH

____ OTHER (SPECIFY: _________________________________)

____ DON’T KNOW

Q4. Was it for a specific medical condition?


____ YES

____ NO SKIP Part B intro

____ DON’T KNOW SKIP TO Part B intro





Part B. Awareness - PCOR Aided Awareness


Introduction: Medical research provides us with many ways of treating illnesses and conditions, but sorting through the options can be difficult. Patient Centered Outcomes Research (also called PCOR) is based on many studies and compares the benefits, the risks, and possible side effects of treatments. The research encourages patients and their caregivers to understand their options and discuss them with their health care providers to make the best decisions.

Q5. Prior to this survey, had you heard of the phrase “Patient Centered Outcomes Research”?


____ YES

____ NO SKIP TO Part C

____ DON’T KNOW SKIP TO Part C


Q6. How did you hear about it?


LISTEN TO RESPONDENT’S ANSWER AND CHECK ALL THAT APPLY.


____ HEALTH CARE PROVIDER – DOCTOR, PHYSICIAN ASSISTANT, NURSE PRACTITIONER, OR OTHER

____ FRIEND OR FAMILY MEMBER

____ NEWSPAPER/JOURNAL/MAGAZINE

____ SOCIAL MEDIA/BLOG (TWITTER)

____ WEB SITE

____ EMAIL

____ EXHIBIT

____ CLINIC/WIC/HEALTH DEPARTMENT

____ POSTER/FLYER/BROCHURE

____ LISTSERVE

____ ORGANIZATION

____ PERSON/SPEAKER AT AN EVENT

____ DON’T KNOW

____ OTHER (SPECIFY: _________________________________)


Q7. How long ago did you hear about it? Was it …

____ Within the last 3 months,

____ Within the last 4-6 months,

____ Within the last 7-9 months, or

____ Longer than that?

____ DON’T KNOW




Q8. Was it in the context of a specific medical condition?


____ YES

____ NO

____ DON’T KNOW


Q9. Are you aware that there is PCOR research for specific medical conditions?


____ YES

____ NO

____ DON’T KNOW


Part C. Awareness - EHCP Awareness


Introduction: The Effective Health Care Program (also called EHCP) funds research that compares treatments for different health conditions. Researchers work with the Agency for Healthcare Research and Quality (AHRQ) in developing the research.


Q10. Prior to this survey, had you ever heard of the Agency for Healthcare Research and Quality?


____ YES

____ NO

____ DON’T KNOW


Q11. Prior to this survey, had you ever heard of the EHCP?


____ YES

____ NO SKIP TO If Q5 =YES GO TO Part E, if Q5 =NO go to Part H

____ DON’T KNOW SKIP TO PART D CHECK


Q12. How did you hear about it?


LISTEN TO RESPONDENT’S ANSWER AND CHECK ALL THAT APPLY.


____ HEALTH CARE PROVIDER – DOCTOR, PHYSICIAN ASSISTANT, NURSE PRACTITIONER, OR OTHER

____ FRIEND OR FAMILY MEMBER

____ NEWSPAPER/JOURNAL/MAGAZINE

____ SOCIAL MEDIA/BLOG (TWITTER)

____ WEB SITE

____ EMAIL

____ EXHIBIT

____ CLINIC/WIC/HEALTH DEPARTMENT

____ POSTER/FLYER/BROCHURE

____ LISTSERVE

____ ORGANIZATION

____ PERSON/SPEAKER AT AN EVENT

____ DON’T KNOW

____ OTHER (SPECIFY: _________________________________)


PART D CHECK: IF Q5 = NO, SKIP TO PART H

IF Q5 = YES, CONTINUE TO PART D


Part D. Awareness - EHCP Web Site Awareness


Introduction: The AHRQ has a web site that contains information about PCOR and the EHCP.


Q13. Prior to this survey, had you ever heard of the AHRQ Effective Healthcare Web site: www.effectivehealthcare.ahrq.gov?


____ YES

____ NO SKIP TO If Q5 =YES GO TO Part E, if Q5 =NO go to Part H

____ DON’T KNOW SKIP TO PART E CHECK


Q14. How did you hear about it?


LISTEN TO RESPONDENT’S ANSWER AND CHECK ALL THAT APPLY.


IF ANSWER IS “HEALTH CARE PROVIDER” CONTINUE TO Q15

OTHERWISE SKIP TO PART E CHECK


____ HEALTH CARE PROVIDER – DOCTOR, PHYSICIAN ASSISTANT, NURSE PRACTITIONER, OR OTHER

____ FRIEND OR FAMILY MEMBER

____ NEWSPAPER/JOURNAL/MAGAZINE

____ SOCIAL MEDIA/BLOG (TWITTER)

____ WEB SITE

____ EMAIL

____ EXHIBIT

____ CLINIC/WIC/HEALTH DEPARTMENT

____ POSTER/FLYER/BROCHURE

____ LISTSERVE

____ ORGANIZATION

____ PERSON/SPEAKER AT AN EVENT

____ DON’T KNOW

____ OTHER (SPECIFY: _________________________________)


Q15. Have you ever visited the web site? www.effectivehealthcare.ahrq.gov?


____ YES

____ NO IF Q5 = YES GO TO PART E, if Q5 = NO GO TO PART H

____ DON’T KNOW SKIP TO PART E CHECK


Q16. When was the last time you visited the web site? Was it …


____ In the past 3 months,

____ In the past 4-6 months,

____ In the past 7-9 months,

____ In the past 10-12 months, or

____ More than 12 months ago?

____ DON’T KNOW


Q17. Why did you visit the web site? Was it …


____ To learn more about EHCP,

____ To learn more about PCOR in general,

____ To learn more about a specific PCOR topic,

____ To download information, or

____ Some other reason? SPECIFY: ______________________________________________

____ DON’T KNOW


Q18. Were you able to find what you were looking for?


____ YES

____ NO

____ DON’T KNOW


Q19. How many times have you visited the web site in the past 6 months? Was it …


____ None,

____ One time,

____ Two times,

____ Three times, or

____ More than three times?

____ DON’T KNOW






PART E CHECK: IF Q6 OR Q12 = ANY SOURCE OTHER THAN HEALTHCARE PROVIDER, CONTINUE TO Q15.

IF Q7 = HEALTH CARE PROVIDER, SKIP TO Q15


Part E. Knowledge/Understanding - Knowledge/Understanding of PCOR


Q20. You indicated that you heard of PCOR through your health care provider. Did your health care provider initiate the discussion about how useful comparing treatments can be?


____ YES SKIP TO Q23

____ NO

____ DON’T KNOW


Q21. Did you initiate the discussion on comparing treatment options?


____ YES

____ NO

____ DON’T KNOW



Q22 CHECK: IF Q6 OR Q12 OR Q14 = ANY SOURCE OTHER THAN HEALTH CARE PROVIDER CONTINUE TO Q22. OTHERWISE SKIP TO Q24.


Q22. You indicated that you heard of PCOR through (FILL SOURCE FROM Q6/Q12/Q14). Do you understand what PCOR is and how useful the research can be?


____ YES

____ NO

____ DON’T KNOW


Q23. Do you feel you could describe PCOR to a family member or friend?


____ YES

____ NO

____ DON’T KNOW


Part F. Attitudes/Beliefs - Perceived Benefits of PCOR


Q24. I am going to read some statements. For each statement, tell me whether you strongly disagree, disagree, neither agree nor disagree, agree, or strongly agree.


  1. PCOR provides information to help you make good medical treatment choices. Do you…


____ Strongly disagree,

____ Disagree,

____ Neither agree nor disagree,

____ Agree, or

____ Strongly agree?

____ DON’T KNOW


  1. Decisions based on PCOR lead to better health outcomes for patients. Do you…


____ Strongly disagree,

____ Disagree,

____ Neither agree nor disagree,

____ Agree, or

____ Strongly agree?

____ DON’T KNOW


  1. Decisions based on PCOR can lower medical expenses/costs. Do you…


____ Strongly disagree,

____ Disagree,

____ Neither agree nor disagree,

____ Agree, or

____ Strongly agree?

____ DON’T KNOW


  1. PCOR is objective information. Do you…


____ Strongly disagree,

____ Disagree,

____ Neither agree nor disagree,

____ Agree, or

____ Strongly agree?

____ DON’T KNOW


  1. PCOR allows for treatment choices to be based on the needs of individual patients. Do you…


____ Strongly disagree,

____ Disagree,

____ Neither agree nor disagree,

____ Agree, or

____ Strongly agree?

____ DON’T KNOW


  1. PCOR is information I can trust. Do you…


____ Strongly disagree,

____ Disagree,

____ Neither agree nor disagree,

____ Agree, or

____ Strongly agree?

____ DON’T KNOW


Part G. Behavior Change/Use - Past/Current Use of PCOR Studies/Products


Q25. Do you currently use PCOR studies to help make medical decisions?


____ YES SKIP TO Q28

____ NO

____ DON’T KNOW


Q26. Have you ever used PCOR studies to help make medical decisions?


____ YES

____ NO SKIP TO Q28

____ DON’T KNOW SKIP TO Q28


Q27. When did you use PCOR studies to make medical decisions? Was it….


____ In the past 3 months,

____ In the past 4-6 months,

____ In the past 7-9 months,

____ In the past 10-12 months, or

____ More than 12 months ago?

____ DON’T KNOW


[INSERT DESCRIPTION OF PCOR GUIDES]


Q28. Prior to this survey, were you aware of the PCOR consumer guides?

____ YES

____ NO SKIP TO Q31 CHECK

____ DON’T KNOW SKIP TO Q31 CHECK


Q29. Have you ever used one or more of the PCOR consumer guides?

____ YES

____ NO SKIP TO Q31 CHECK

____ DON’T KNOW SKIP TO Q31 CHECK



Q30. I am going to read some statements about the PCOR consumer guides. For each statement, tell me whether you strongly disagree, disagree, neither agree nor disagree, agree, or strongly agree


  1. In general, PCOR consumer guides are easy to understand. Do you…


____ Strongly disagree,

____ Disagree,

____ Neither agree nor disagree,

____ Agree, or

____ Strongly agree?

____ DON’T KNOW


  1. You can trust the information in the PCOR consumer guides. Do you…


____ Strongly disagree,

____ Disagree,

____ Neither agree nor disagree,

____ Agree, or

____ Strongly agree?

____ DON’T KNOW


Q31 CHECK: IF Q25 = YES or IF Q26 = YES, ASK Q31-Q32. OTHERWISE GO TO Q33.


Q31. Did your health care provider share this material and a decision was made during the office visit?


____ YES

____ NO SKIP TO Q33

____ DON’T KNOW SKIP TO Q33


Q32. Did you feel your health care provider was open to talking to you about the information and that you made a decision together?


____ YES

____ NO

____ DON’T KNOW






Q33. Where do you prefer to get your medical information from?


LISTEN TO RESPONDENT’S ANSWER AND CHECK ALL THAT APPLY.


____ HEALTH CARE PROVIDER – DOCTOR, PHYSICIAN ASSISTANT, NURSE PRACTITIONER, OR OTHER

____ FRIEND OR FAMILY MEMBER

____ NEWSPAPER/JOURNAL/MAGAZINE

____ SOCIAL MEDIA/BLOG (TWITTER)

____ WEB SITE

____ EMAIL

____ EXHIBIT

____ CLINIC/WIC/HEALTH DEPARTMENT

____ POSTER/FLYER/BROCHURE

____ LISTSERVE

____ ORGANIZATION

____ PERSON/SPEAKER AT AN EVENT

____ DON’T KNOW

____ OTHER (SPECIFY: _________________________________)


Part H. Behavior Change/Use - Interest in Learning More About PCOR


Q34. Are you interested in learning more about PCOR for specific medical conditions?


____ YES

____ NO

____ DON’T KNOW


Q35. Are you interested in learning more about the EHCP?


____ YES

____ NO

____ DON’T KNOW


Q36. Are you interested in using PCOR to make medical decisions for yourself or a family member/close friend?


____ YES

____ NO

____ DON’T KNOW





Part I. Behavior Change/Use - Intention to Use PCOR Studies/Products


Q37. Within the next year, do you intend to use PCOR studies/products to prepare for a medical visit and/or make medical decisions for you or a family member?


____ YES IF Q5= YES go to Q38 and if Q5= NO go to Part N

____ NO

____ DON’T KNOW


PART K CHECK: IF Q5 = YES, CONTINUE TO PART K

IF Q5 = NO, SKIP TO PART N


Part K. Exposure to Dissemination Strategies – Publicity Center: Media and Marketing


Q38 CHECK: IF Q6 OR Q12 OR Q14 = ANY SOURCE OTHER THAN HEALTH CARE PROVIDER CONTINUE TO INTRODUCTION BELOW. OTHERWISE SKIP TO Q42.


Introduction: From your earlier responses, you indicated you heard about PCOR from a source other than your health care provider, prior to this survey.


Q38. When was the last time you recall hearing/seeing the information? Was it …


____ Within the last month,

____ Within the last 2-4 months,

____ Within the last 5-6 months, or

____ Over six months ago?

____ DON’T KNOW


Q39. Was the information on a specific medical condition?


____ YES

____ NO

____ DON’T KNOW


Q40. Was the information useful to you?


____ YES SKIP TO Q42

____ NO

____ DON’T KNOW


Q41. What would have made it more useful?


SPECIFY: __________________________________________________________


Part L. Exposure to Dissemination Strategies – Publicity Center: Virtual Centers


Q42. In the past six months have you seen links to the EHCP web site or PCOR topics on a web site? PROVIDE PUBLICITY CENTER VIRTUAL CENTER SITE LIST.


____ YES

____ NO SKIP to Part M

____ DON’T KNOW SKIP to Part M


Q43. Which web site?


SPECIFY: __________________________________________________________


Q44. What was the information about?


SPECIFY: __________________________________________________________


Part M. Exposure to Dissemination Strategies – Publicity Center and Regional Office: Partnerships


Q45. Are you a member of any professional organizations?


____ YES

____ NO PART N

____ DON’T KNOW SKIP to Part N


Q46. Did the organization inform you about the EHCP or PCOR?


____ YES

____ NO

____ DON’T KNOW


Part N. Other – Respondent Characteristics


Introduction. Now I am going to ask you some questions for informational purposes only. Your responses will not affect the data analysis. These are voluntary questions, so please let me know if you do not wish to answer a particular question.


Q47. What is your age?


CODE RESPONSE INTO APPROPRIATE CATEGORY.


____ 18-33 YEARS

____ 34-44 YEARS

____ 44-64 YEARS

____ 65 YEARS OR OLDER

____ DON’T KNOW

____ REFUSED


Q48. IF UNCLEAR: What is your gender?


CODE RESPONSE INTO APPROPRIATE CATEGORY.


____ MALE

____ FEMALE

____ DON’T KNOW

____ REFUSED


Q49. What is your ethnicity? Are you…


____ Hispanic or Latino

____ Not Hispanic or Latino

____ DON’T KNOW

____ REFUSED


Q50. What is your race? Are you …


____ American Indian or Alaska Native,

____ Asian,

____ Native Hawaiian or other Pacific Islander,

____ Black or African American, or

____ White?

____ DON’T KNOW

____ REFUSED


Q51. In what state do you live?


SPECIFY: __________________________________________________________


Q52. Are you currently seeking medical care?


____ YES

____ NO

____ DON’T KNOW

____ REFUSED





Q53. Do you provide care for another person with a medical condition, such as a family member?


____ YES

____ NO

____ DON’T KNOW

____ REFUSED


Q54. Are you a member of a patient advocacy group?


____ YES

____ NO

____ DON’T KNOW

____ REFUSED



Q55. Do you participate in the Medicare program?


____ YES

____ NO

____ DON’T KNOW

____ REFUSED


Q56. Do you participate in the Medicaid program?


____ YES

____ NO

____ DON’T KNOW

____ REFUSED


Q57. In a few months we will be conducting focus groups to learn more about consumers’ awareness and understanding of PCOR. Based on your answers to these survey questions, you may be someone who we would like to have in the focus groups. You would need to have a telephone and computer to participate. Would you be interested in participating in the focus group if we called you?


____ YES

____ NO SKIP TO CLOSING

____ DON’T KNOW SKIP TO CLOSING


Q58. Can you please confirm your full name and telephone number?


RECORD NAME:


RECORD TELEPHONE NUMBER (INCLUDING AREA CODE):


Closing. Those are all the questions I have. Thank you very much for your time and input on the survey.


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