Form No number No number General Survey

Attachment D5 - General Survey

This survey is intended for consumers 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.

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

Objectives – Types of information to be collected include:

1. Identify general descriptive characteristics of respondents.

2. Understand respondents’ awareness of the EGAPP process and products (e.g., evidence reports, EGAPP Working Group recommendations).

3. Determine the perceived value of the efforts of the EGAPP pilot project to provide reliable information on genetic tests for health care providers and consumers.

Form Approved

OMB No.: 0920-0751

Exp. Date: 8/31/2010

Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Survey

Introduction to the EGAPP Survey

Evaluation of Genomic Applications in Practice and Prevention (EGAPP) is an initiative launched in 2004 by the National Office of Public Health Genomics (NOPHG) at the Centers for Disease Control and Prevention (CDC). 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.

If you are familiar with the EGAPP pilot project or the information on some genetic tests that has been collected and made publicly available by EGAPP, we are interested in your opinions on its usefulness. Thank you for your time and willingness to answer the questions.

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.

Public reporting burden of this collection of information is estimated range between 5 and 10 minutes with an average of 8 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 (0920-0751).

Please note: While taking the survey, please do not use your browser's back and/or forward buttons; please only use the next and previous buttons within the survey. Thank you.

1. How were you directed to this survey? (Please check one)

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

___ CDC’s Genomics Weekly Update

___ An e-mail from EGAPP

___ An e-mail from a consumer organization you belong to

___ Other (please specify)

If you indicated you were directed to this survey from a consumer organization you belong to, please specify that organization here: _____________________________________________

2. In what country do you live?

___ United States

___ Other Exit survey SUBMIT.

3. 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)

OR

____ I have no interest or role related to genetic testing

If respondent checks this option → Exit survey 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 question 4.

4. What is your sex?

___ Male

___ Female

5a. What is your ethnicity?

___ Hispanic or Latino

___ Not Hispanic or Latino

5b. What is your race (Select one or more)?

___ American Indian or Alaska Native

___ Asian

___ Black or African American

___ Native Hawaiian or Other Pacific Islander

___ White

6. Prior to this survey, had you read or heard about EGAPP?

___ yes

___ no Skip to question 8a (first survey distribution) or 9a (second survey distribution)

___ unsure Skip to question 8a (first survey distribution) or 9a (second survey distribution)

7. Where have you read or heard about EGAPP activities? (Please check all that apply)

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

____ Information was emailed to me from EGAPP.

____ I read about EGAPP in a newsletter.

____ I read about EGAPP in another publication.

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

____ Information from a consumer or other organization.

____ Other (please describe) _______________________________________

If you checked the "I read about EGAPP in a newsletter" response above, please specify that newsletter title here:

If you checked the "I read about EGAPP in another publication" response above, please specify that publication here:

If you checked the "Information from a consumer or other organization" response above, please specify that organization here:

If this is the second survey distribution, respondents will be skipped to question 9a

An expert panel has made recommendations about the use of a specific genetic test (described below) based on a careful review of all available information through the EGAPP project. The test is CYP450 – a genetic test for use in patients treated for depression with a certain type of anti-depressant drugs (called “SSRIs”) to help select the right drug and dose for each person.

8a. Have you read or heard anything about “CYP450 testing”, or about a genetic test that is now available to help doctors choose the correct drug and drug dose for patients diagnosed with depression?

___yes ___no ___unsure

If no or unsure, skip to 11.

8b. Do you remember where you read or heard something about this test?

___ Internet

___ Other media, such as newspaper or television

___ Patient organization website or materials

___ From my doctor

___ I do not remember

___ Other (describe) _________________________________

If this is the first survey distribution, respondents will be skipped to question 11.

An expert panel has made recommendations about the use of a specific genetic test (described below) based on a careful review of all available information through the EGAPP project. The test is HNPCC (Lynch Syndrome) – genetic testing that may be used in newly diagnosed colorectal cancer patients and their families to detect an inherited form of cancer.

9a. Have you read or heard anything about “HNPCC testing” or “Lynch Syndrome testing” or about genetic testing that identifies an inherited form of colorectal cancer?

___yes ___no ___unsure

If no or unsure, skip to 11.

9b. Do you remember where you read or heard something about this test?

___ Internet

___ Other media, such as newspaper or television

___ Patient organization website or materials

___ From my doctor

___ I do not remember

___Other (describe) _________________________________

An expert panel has made recommendations about the use of a specific genetic test (described below) based on a careful review of all available information through the EGAPP project. The test is UGT1A1 – a pharmacogenetic test for colorectal cancer patients treated with irinotecan.

10a. Have you read or heard anything about “UGT1A1 testing,” a pharmacogenetic test for colorectal cancer patients treated with irinotecan?

___yes ___no ___unsure

If no or unsure, skip to 11.

10b. Do you remember where you read or heard something about this test?

___ Internet

___ Other media, such as newspaper or television

___ Patient organization website or materials

___ From my doctor

___ I do not remember

___Other (describe) _________________________________

11. Please indicate your agreement with the following statements as they pertain to genetic testing?

a) Good evidence that supports the usefulness of a

new genetic test must be gathered before the test

can be offered.

2. Genetic tests that may improve health should be made available as soon as

possible even when some evidence is still missing.

c) I am sometimes concerned about how

useful genetic tests really are.

d) I rely on patient support groups to tell me about

the usefulness of genetic tests.

e) I gather information on my own to learn about

the usefulness of a genetic test.

f) I am sometimes concerned about whether we

really know if a new genetic test is really useful.

g) Information about the usefulness of genetic tests

should be readily available to the general public.

h) I rely on my healthcare provider (doctor, physician assistant, nurse, etc.) to tell me about the usefulness of genetic tests.

[The following two questions will be asked only of those respondents who indicated in question 6 that they had heard of EGAPP prior to this survey.]

i) I support the work that EGAPP is doing

to provide reliable information about genetic

tests.

j) I am concerned that the work that EGAPP

is doing will make genetic tests less available

to those who need them.

12. Have you visited the EGAPP website: www.egappreviews.org?

___ yes

___ no Skip to question 14

13. How useful did you find the EGAPP website?

___very useful ____ somewhat useful ___ not useful

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

COMMENT BOX HERE

This is the end of the survey, thank you for your feedback! Click the "Submit" button below to submit your responses. --------→ SUBMIT

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