D5. General Survey

Evaluation of Genomic Applications in Practice and Prevention (EGAPP)

ATTACHMENT D General Survey

(EGAPP) - General Survey - att D5

OMB: 0920-0751

⚠️ Notice: This form may be outdated. More recent filings and information on OMB 0920-0751 can be found here:

2009-02-20 - No material or nonsubstantive change to a currently approved collection

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Attachment D1 - Healthcare Provider Survey

This survey is intended for health care providers accessed through: 1) professional organizations; 2) health plans or HMOs; and 3) health care payers/insurers.

Note: Skip patterns will be programmed into the online form, making a streamlined survey for respondents.

Objectives – Types of information to be collected include:

Identify general descriptive characteristics of respondents (e.g., type of practitioner, medical specialty, practice setting).
Understand respondents’ awareness of the EGAPP project and products (e.g., evidence reports, EGAPP Working Group recommendations, targeted informational messages).
Determine if the respondents have seen any general information on EGAPP or specific products (e.g., written materials about EGAPP, presentations at professional meetings, evidence reports).
Determine if the respondent has read any specific products (e.g., published or web-posted evidence report, published recommendations).
Get feedback on whether specific products addressed their needs for integrating genetic testing into clinical practice (e.g., knowledge of new genetic tests, providing information to patients).
Identify any impact that the specific products have had on the respondents’ clinical practice (e.g., decision to offer testing).

EGAPP SURVEY

Form Approved

OMB No.: __________

Exp. Date: __________

ntroduction to the EGAPP Survey

Evaluation of Genomic Applications in Practice and Prevention (EGAPP) is a model project initiated in 2004 by the National Office of Public Health Genomics (NOPHG) at the Centers for Disease Control and Prevention (CDC). The efforts of EGAPP are focused around a 13-member independent, non-federal, multidisciplinary EGAPP Working Group. The goal of EGAPP is to establish a systematic, evidence-based process to assess the effectiveness of selected genetic tests that are in transition from research to clinical and public health practice.

Products of the EGAPP project include evidence reports on selected genetic tests and published EGAPP Working Group recommendations on the appropriate use of the tests based on the evidence collected. Some evidence reports sponsored by the EGAPP project are conducted and released by Agency for Healthcare Research and Quality (AHRQ) Evidence-Based Practice Centers.

To evaluate the value and impact of the EGAPP products, an independent consultant has been contracted to survey key stakeholder groups, including healthcare providers, healthcare payers and purchasers, certain policy organizations, targeted consumer groups, and website visitors. Response to these surveys is very important to inform the EGAPP Working Group and CDC about the best methods and approaches for future review of the effectiveness of emerging genetic tests, and about the potential impact of accurate and timely information on genetic tests on current healthcare practices.

Your feedback will provide important information about the relevance of EGAPP products to your practice. The questions relate only to EGAPP-supported evidence reports and EGAPP Working Group Recommendations. Thank you for your time and assistance.

Please enter today’s date: _______ / ______/ _______

Public reporting burden of this collection of information is estimated to average 10 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. 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 CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; ATTN: PRA (0920-XXXX).

1. What is your role as a healthcare provider?

___ Physician

___ Laboratory Director

___ Physician Assistant

___ Genetic Counselor

___ Nurse Practitioner

___ Certified Nurse-Midwife

___ Nurse

___ Other (please specify): ________________________________________

___ I am no longer in practice  Please do not continue.

SUBMIT

2. What is your primary specialty?

___ General Practice

___ Family Medicine

___ Internal Medicine

___ Obstetrics/Gynecology

___ Oncology

___ Pathology

___ Psychiatry

___ Clinical Genetics

___ Other (please specify): ________________________________________

3. Which best describes the setting in which you practice? (please check only one)

___ Hospital

___ Group practice

___ Private practice

___ Staff model HMO

___ Academic medical center

___ Independent laboratory

___ Other (please specify): ________________________________________

4. How did you first read or hear about EGAPP activities? (please check all that apply)

____ I read about EGAPP on the CDC or EGAPPreviews.org website

____ I heard about EGAPP through a professional journal/newsletter (please

specify journal/newsletter title) ___________________________________________

____ A colleague told me about EGAPP

____ I learned about EGAPP at a meeting (please specify)_________________

____ This survey is my first encounter with EGAPP activities Skip to question 6

____ Other (please describe) _______________________________________

5. The EGAPP project sponsors the website: EGAPPreviews.org. Please rate the three sections of the EGAPP website indicated below, using a rating scale of 1=poor 2=fair 3=good 4=excellent,. If you have not used the section specified, please check ‘not used’ and move on to the next section.

Evidence Reports & EGAPP Working Group Recommendations: _____ not used

Userfriendliness 1 2 3 4

Clarity 1 2 3 4

Understandability 1 2 3 4

Value of information 1 2 3 4

EGAPP Methods: _____ not used

Userfriendliness 1 2 3 4

Clarity 1 2 3 4

Understandability 1 2 3 4

Value of information 1 2 3 4

EGAPP Topics: _____ not used

Userfriendliness 1 2 3 4

Clarity 1 2 3 4

Understandability 1 2 3 4

Value of information 1 2 3 4

What potential impact do you think the information on specific genetic tests developed by EGAPP could have on your clinical practice? (please check only those that apply)

____ Help me to understand the tests and their uses

____ Help me to use the tests appropriately in patient care

____ Help me to better explain the tests to my patients

____ Help me to determine when the tests may be of value to my

patients

____ Help me to assess potential risks and benefits of using the tests

____ Help me determine what intervention to recommend

____ Inform me about the consequences of testing or interventions

____ Increase my awareness of the potential impact of the test on my

patients and their families

____ Help me integrate into my practice knowledge about the test related

disorders

____ Other (please describe) ________________________________________

____ I have no opinion on potential impact at this time

Below are sets of questions about three of the genetic tests on which EGAPP has completed evidence reviews. As appropriate, please answer all questions related to each test. The tests are described briefly before the questions. The tests are:

CYP450 – this test used in patients treated for depression with selective serotonin reuptake inhibitors or SSRIs

HNPCC – a test for newly diagnosed colorectal cancer patients and their families to detect a heritable form of colorectal cancer

UGT1A1 - a test for colorectal cancer patients to be treated with irinotecan

For the questions below, please place a check in the box only if your response is ‘yes’. Check all options that apply.
General knowledge on the genetic test 	CYP450	HNPCC	UGT1A1
I learned about this testing through a professional organization (specify___________________________)
I learned about this testing through the media
I learned about this testing from a colleague
I learned about his testing in a professional newsletter
I learned about this testing on the internet
I learned about this testing through drug or diagnostics company literature
Other (specify)
I learned about this testing through the following EGAPP sources:
Evidence Report commissioned by EGAPP (either full report or a published summary)
Published recommendations from the EGAPP Working Group
Highlights from the Evidence Report or Working Group recommendations (e.g. from your professional organization, in the media)
Other (specify)

a) Regarding CYP450, please respond to the following questions:

Have you read the EGAPP-sponsored AHRQ evidence report or published summary of the evidence report on CYP450 testing?

____ yes ____ no ____unsure

If no or unsure, respondent skips to item iv

How useful did you find the evidence report/published summary?

___very useful ____ somewhat useful ___ not useful

Will this information on CYP450 testing change the way you practice?

___ yes ___ no ___unsure

If yes, please explain: _____________________________________

Have you read the EGAPP Working Group recommendations about the use of

CYP450 testing?

___ yes ___ no ___unsure

If no or unsure, respondent skips to item viii

v.) How useful did you find the recommendations?

___ very useful ___ somewhat useful ___not useful

Will the recommendations about the use of CYP450 testing change the way you practice?

___yes ___no ___unsure

If yes, please explain: _____________________________________

Which will be more useful to you in your practice? (Please check one.)

___evidence report or published summary of evidence ___recommendations

Are you currently using CYP450 testing for your patients with depression treated with selective serotonin reuptake inhibitors (SSRIs)?

___ yes ___ no ___ unsure

Please provide any comments about the EGAPP evidence report/published summary or recommendations on the use of CYP450 testing that you feel would improve the information for providers.

Comment box here

b) Regarding HNPCC, please respond to the following questions:

Have you read the EGAPP-sponsored AHRQ evidence report or published summary on HNPCC testing?

____ yes ____ no ____unsure

If no or unsure, respondent skips to item iv

How useful did you find the evidence report/published summary?

___very useful ____ somewhat useful ___ not useful

Will this information on HNPCC testing change the way you practice?

___ yes ___ no ___unsure

If yes, please explain: _____________________________________

Have you read the EGAPP Working Group recommendations about the use of HNPCC testing?

___ yes ___ no ___unsure

If no or unsure, respondent skips to item viii

How useful did you find the recommendations?

___ very useful ___ somewhat useful ___not useful

Will the recommendations about the use of HNPCC testing change the way you practice?

___yes ___no ___unsure

If yes, please explain: _____________________________________

Which will be more useful to you in your practice? (Please check one.)

___evidence report/published summary ___recommendations

Are you currently using HNPCC testing in patients with newly diagnosed colorectal cancer?

___ yes ___yes- Only patients with a family history of CRC ___ no ___ unsure

Please provide any comments about the EGAPP evidence reports/published

summary or recommendations on the use of HNPCC testing that you feel would improve the information for providers.

Comment box here

c. Regarding UGT1A1, please respond to the following questions:

Have you read the EGAPP evidence report or published summary on UGT1A1 testing?

____ yes ____ no ____unsure

If no or unsure, respondent skips to item iv

How useful did you find the evidence report/published summary?

___very useful ____ somewhat useful ___ not useful

Will this information on UGT1A1 testing change the way you practice?

___ yes ___ no ___unsure

If yes, please explain: _____________________________________

Have you read the EGAPP Working Group recommendations about the use of UGT1A1 testing?

___ yes ___ no ___unsure

If no or unsure, respondent skips to item viii

How useful did you find the recommendations?

___ very useful ___ somewhat useful ___not useful

Will the recommendations about the use of UGT1A1 testing change the way you practice?

___yes ___no ___unsure

If yes, please explain: _____________________________________

Which will be more useful to you in your practice? (Please check one.)

___evidence report /published summary ___recommendations

Are you currently using UGT1A1 testing for your patients with colorectal cancer treated with irinotecan? ___ yes ___ no ___ unsure

Please provide any comments about the EGAPP evidence reports/published summary or recommendations about UGT1A1 testing that you feel would improve the information for providers.

Comment box here

[Question 8 will only be asked of those respondents who have read at least one EGAPP-sponsored evidence review/summary or recommendations (i.e., respondents who answered yes to at least one of the following questions: 7.a.i, 7.a.iv, 7.b.i, 7.b.iv, 7.c.i, 7.c.iv.). Others skip to question 9]

8. Using the following response scale, please indicate the relevance of the information

from the EGAPP-sponsored evidence reports and recommendations to your clinical practice. (Check the appropriate number)

1=not relevant 2=somewhat relevant 3=relevant 4=very relevant

To understand the test-related disorders

or drug effect 1 2 3 4

To make informed decisions about patient

care 1 2 3 4

To understand the validity of the tests 1 2 3 4

To understand how well the tests

perform in the clinical setting 1 2 3 4

To understand the utility and value added

of the tests 1 2 3 4

To understand laboratory quality issues 1 2 3 4

To understand how to access the

interventions or actions related to the tests 1 2 3 4

To understand the potential benefits

of the tests 1 2 3 4

To understand the potential harms related

to testing 1 2 3 4

To understand the potential benefits and

risks of follow-up testing or intervention 1 2 3 4

To identify the population/individuals for

which the tests were developed 1 2 3 4

To understand the financial costs

associated with testing 1 2 3 4

To understand the economic benefits

associated with actions resulting from

testing 1 2 3 4

To understand the potential impact of

testing on patients 1 2 3 4

To understand the ethical, legal, and social

implications related to testing 1 2 3 4

9. Were you aware that the EGAPP Project Team has been inviting comments and

suggestions for potential topics for review? ___ Yes ___ No

If no, respondent skips to #12

10. Have you sent a comment or suggestion? ___ Yes ___ No ___No Applicable

11. Have you had any difficulty finding or accessing the topic suggestion webpage on the

EGAPPreviews.org website?

___ Yes ___ No ___ Unsure/Don’t know ___ Not Applicable

If yes, please explain: _________________________________________

12. Have you had any difficulty finding or accessing general information about the

EGAPP project, the EGAPP Evidence Reports or the Working Group recommendations?

___ Yes ___ No ___ Unsure/Don’t know ___ Not Applicable

If yes, please explain: __________________________________________

13. If you have other comments you would like to make please do so in the box below.

COMMENT BOX HERE

Thank you for your feedback! --------→ SUBMIT

Attachment D5 - General Survey

This survey is intended for general use with consumers, public health workers, and others accessed through: 1) general healthcare or genetics advocacy organizations, 2) organizations related to specific topics (e.g., Colon Cancer Alliance, National Mental Health Association), and 3) visitors to the EGAPP website(s).

Note: Skip patterns will be programmed into the online form, making a streamlined survey for respondents.

Objectives – Types of information to be collected include:

Identify general descriptive characteristics of respondents.
Understand respondents’ awareness of the EGAPP process and products (e.g., evidence reports, EGAPP Working Group recommendations, targeted informational messages), and belief in the need for an evidence review process for genetic tests.
Determine if the respondents have seen any general information or products.
Determine if the respondents have read any products (e.g., targeted informational messages based on evidence report or Working Group recommendations), and if so, how useful they were.
Determine whether the products might have an impact on the respondents’ personal decision making or work activities.

Form Approved

OMB No.: __________

Exp. Date: __________

EGAPP SURVEY

Introduction to the EGAPP Survey

Date: _______ / ______/ _______

Were you directed to this survey from: (please check one)

___ EGAPP web pages on the EGAPPreviews.org or other website

___ CDC’s Genomics Weekly Update

___ An e-mail from EGAPP

___ A consumer or professional organization (please specify) __________________

___ Other (please specify): _____________________________________________

2. Please indicate which of the following best describes your interest or role as it relates to genetic testing? (Please select one):

___ Healthcare Provider (e.g., physician, physician assistant, nurse) (1)

___ Health plan or insurer (2)

___ Company or organization that purchases health policies/plans (3)

___ Representative of a medical professional organization (4)

___ Healthcare consumer, website visitor, or individual involved in a healthcare or genetics- related advocacy group) (5)

____ I have no interest or role related to genetic testing

If respondent checks this option, “Please do not continue” → SUBMIT

If (1), respondent will be linked to Healthcare Provider Survey questions.

If (2), respondent will be linked to Policy/Payer Survey questions.

If (3), respondent will be linked to Purchaser Survey questions.

If (4), respondent will be linked to Policy Survey questions.

If (5) is checked respondent is directed to continue to question 3 and complete this survey.

3. How did you first hear about EGAPP activities? (please check all that apply)

____ I read about EGAPP on the CDC or EGAPPreviews.org website

____ Information was emailed to me from EGAPP

____ I read about EGAPP in a newsletter (please specify which one)

______________________________________________________

____ I read about EGAPP in another publication (specify) _____________

____ A colleague, friend, or family member told me about EGAPP

____ Information from a consumer advocacy organization

Please specify what organization:____________________________

____ This survey is my first encounter with EGAPP activities  Skip to question 5

____ Other (please describe) _______________________________________

4. The EGAPP project sponsors the website: EGAPPreviews.org. Please rate the three sections of the EGAPP website indicated below, using a rating scale of 1=poor 2=fair 3=good 4=excellent,. If you have not used the section specified, please check ‘not used’ and move on to the next section.

Evidence Reports & EGAPP Working Group Recommendations: _____ not used

Userfriendliness 1 2 3 4

Clarity 1 2 3 4

Understandability 1 2 3 4

Value of information 1 2 3 4

EGAPP Methods: _____ not used

Userfriendliness 1 2 3 4

Clarity 1 2 3 4

Understandability 1 2 3 4

Value of information 1 2 3 4

EGAPP Topics: _____ not used

Userfriendliness 1 2 3 4

Clarity 1 2 3 4

Understandability 1 2 3 4

Value of information 1 2 3 4

5. The EGAPP Working Group has made clinical recommendations based on EGAPP

evidence reviews of several tests. Three of the tests are described below.

CYP450 – this test used in patients treated for depression with selective serotonin reuptake inhibitors or SSRIs

HNPCC – a test for newly diagnosed colorectal cancer patients and their families to detect a heritable form of colorectal cancer called hereditary non-polyposis colon cancer or HNPCC

UGT1A1 - a test for colorectal cancer patients to be treated with irinotecan

Have you:

…read or heard anything about “CYP450 testing” or about a genetic test that is intended to help doctors choose the right drug and the right dose to treat depression? ___yes ___no

If yes, please indicate where you have read or heard something about CYP450 testing:

___ Internet ___Other media, such as newspaper or television

___ Advocacy group website or materials ___Professional Organization

___ Other _________________________________

___ I do not remember

If yes, was the information relevant to ____ your work or ____ your personal interests?

…read or heard anything about “HNPCC testing” or genetic testing that identifies inherited forms of colon cancer? ___yes ___no

If yes, please indicate where you have read or heard something about HNPCC testing:

___ Internet ___Other media, such as newspaper or television

___ Advocacy group website or materials ___Professional Organization

___ Other _________________________________

___ I do not remember

If yes, was the information relevant to ____ your work or ____ your personal interests?

…read or heard anything about “UGT1A1 testing” or a genetic test that is intended to reduce bad reactions to the drug irinotecan (commonly used for treating colorectal cancer)? ___yes ___no

If yes, please indicate where you have read or heard something about UGT1A1 testing:

___ Internet ___Other media, such as newspaper or television

___ Advocacy group website or materials ___Professional Organization

___ Other _________________________________

___ I do not remember

If yes, was the information relevant to ____ your work or ____ your personal interests?

Please indicate your agreement with the following statements as they pertain to genetic testing? Please use the following response scale:

1= strongly disagree 2=somewhat disagree 3=somewhat agree 4=strongly agree 5=no opinion

Evidence on the safety of genetic tests

should be available before the tests can

be used in clinical practice. 1 2 3 4 5

Evidence on the accuracy of genetic tests

should be available before the tests can be

used in clinical practice. 1 2 3 4 5

c) I rely on my physician to advise me about

the safety of genetic tests. 1 2 3 4 5

d) I rely on advocacy groups to advise me

about the safety of genetic tests. 1 2 3 4 5

e) EGAPP provides the kind of information

that would help me understand the

safety of genetic tests 1 2 3 4 5

f) I am sometimes concerned about how useful

genetic tests really are. 1 2 3 4 5

g) I am sometimes concerned about the accuracy of

information I receive about genetic tests. 1 2 3 4 5

h) I support the work that EGAPP is doing

to provide important information about

genetic testing 1 2 3 4 5

i) Information about the safety and effectiveness

of genetic tests should be readily available to the general public. 1 2 3 4 5

j) Distribution of information about genetic

tests should be limited to professionals. 1 2 3 4 5

k) Genetic tests are often misunderstood and

may cause false hope for some people. 1 2 3 4 5

l) Genetic tests are often misunderstood and

may cause false alarm for some people. 1 2 3 4 5

m) Genetic testing should be made available

to anyone who wants it. 1 2 3 4 5

n) Health insurance should reimburse/cover

genetic testing when it is medically indicated. 1 2 3 4 5

o) The general public should have a basic

understanding about genetics and genetic

testing. 1 2 3 4 5

EGAPP information will be useful to me

in my work. 1 2 3 4 5

EGAPP information will be useful

to me in my personal life. 1 2 3 4 5

r) I have a professional interest in genetics. 1 2 3 4 5

s) I have a personal interest in genetics. 1 2 3 4 5

8. Will information about these genetic tests help you make more informed decisions about using the tests?

___ Yes ___ No ___ Uncertain ___ Not Applicable

9. Were you aware that the EGAPP project team has been inviting comments and

suggestions for potential topics for review? ___ Yes ___ No

If no, respondent will be skipped to #12

9. Have you sent a comment or suggestion? ___ Yes ___ No

10. Do you plan on sending a comment or suggestion in the future?

___ Yes ___ No ___ Not sure

11. Have you had any difficulty finding or accessing the topic suggestion webpage on the

EGAPPreviews.org website?

___ Yes ___ No ___ Unsure/Don’t know ___ Not Applicable

12. Have you had any difficulty finding or accessing general information about the

EGAPP project, the EGAPP Evidence Reports or the Working Group recommendations?

___ Yes ___ No ___ Unsure/Don’t know ___ Not Applicable

If yes, please explain: __________________________________________

13. If you have other comments you would like to make please do so in the box below.

COMMENT BOX HERE

Thank you for your feedback! --------→ SUBMIT

File Type	application/msword
File Title	ATTACHMENT D: EGAPP SURVEYS
Author	Lois P. Voelker
Last Modified By	Lois P. Voelker
File Modified	2007-02-12
File Created	2007-02-12