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Protocol - Awareness of Pharmacogenomics

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Description

This series of questions can be used to determine an individual’s knowledge of pharmacogenomics (PGx) and if the individual is willing to participate in PGx research. It is beneficial for patients to understand that genetic traits may influence the effects of medications and that clinicians are using PGx for patient safety purposes.

Specific Instructions

None 

Protocol

This questionnaire has three sections containing questions about: A) your experiences with diseases and medication use, B) your knowledge on pharmacogenetics, C) your attitude towards pharmacogenetics.

The participation in this survey is voluntary. If you do not want to answer a particular question, you are of course free to do so. Please write the answers to open questions in the space provided. If you need more space, please use the back of the paper and indicate the question number. For all other questions, please use the checkboxes. If you want to change your answer, please put a line through the checked answer and then choose the appropriate box. Always check only one answer except if stated otherwise.

Experiences

Below are some questions about your personal experiences with diseases and medication use.

1. Have you ever experienced a side effect of a medication?

[ ] Yes

[ ] No

[ ] No, but a family member has

[ ] I do not know

2. Have you ever stopped taking a medication because of the side effects of this medication?

[ ] Yes

[ ] No

[ ] I do not know

3. Have you ever stopped taking a medication because you felt that it did not work?

[ ] Yes

[ ] No

[ ] I do not know

4. Do you think that there could be differences between people in their body’s response to medication due to differences in their DNA?

[ ] Yes

[ ] No

[ ] I do not know

Knowledge

These questions enable us to know about your understanding of pharmacogenetics. If you do not know or are not sure, you can also indicate this as the answer.

The DNA stores your hereditary characteristics.

5. Do you think that determining the differences in DNA that are associated with the effect of medication will help to reduce (future) side effects?

[ ] Yes

[ ] No

[ ] I do not know

6. Do you think that knowing the differences in DNA that are associated with the effect of medication will help improve (future) drug treatment?

[ ] Yes

[ ] No

[ ] I do not know

“Pharmacogenetics looks at the influence of your genetic traits on the effect of medication. It is possible that different people break down medication differently due to variations in their genetic traits.”

7. Before you received this questionnaire, have you ever heard of the term “pharmacogenetics”?

[ ] Yes

[ ] No

8.Before you received this questionnaire, did you know the meaning of “pharmacogenetics”?

[ ] Yes

[ ] No

9. Have you ever had a pharmocogenetic test? In a pharmacogenetic test, your hereditary traits related to effect of a medication will be examined.

[ ] Yes

[ ] No

[ ] No, but I have had another kind of DNA test

[ ] I do not know

10. Do you know someone who has had a pharmacogenetic test?

[ ] Yes

[ ] No

[ ] No, but I know someone who has had another type of DNA-test

Attitude

Below are several questions about your views and attitude towards pharmacogenetics.

11. Suppose that your DNA is associated with the effects of your medication. Would you allow your doctor to use the information about your DNA in your future treatment?

[ ] Yes

[ ] No

[ ] I don’t know, I have never thought about this

[ ] I have been thinking about this, but do not know yet

12. Are you willing to have a DNA test before a certain medication is prescribed?

[ ] Yes

[ ] No

[ ] I do not know

13. Do you want your pharmacogenetic information to be used in your treatment with medicines?

[ ] Yes, during the whole treatment

[ ] Yes, but only during my (potential) pregnancy

[ ] No

[ ] No opinion, I don’t know

14. Would you take part in future research related to pharmacogenetics?

[ ] Yes, go to question 16

[ ] No, go to question 15

[ ] I do not know, go to question 15

15. If not, or in doubt, what is the reason (multiple answers are correct)?

[ ] I do not allow my DNA/genetic information to be used in research

[ ] I do not understand the benefit of genetic testing

[ ] I am worried about the consequences

[ ] I am not interested in pharmacogenetic research

[ ] Otherwise, please describe: ____________________________________

16. Would you like to learn more about DNA tests for pharmacogenetics?

[ ] Yes

[ ] No

[ ] I don’t know

17. Which method of getting information about DNA tests for pharmacogenetics do you prefer (multiple answers are correct)?

[ ] Internet

[ ] Information leaflet

[ ] Advice from your pharmacist

[ ] Advice from your GP

[ ] Otherwise, please describe: _______________________________________

Protocol Name from Source

Daud, A. N. A., et al. (2017). Knowledge and attitude regarding pharmacogenetics among formerly pregnant women in the Netherlands and their interest in pharmacogenetic research. BMC Pregnancy Childbirth, 17(1), 120.

Availability

Available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Life Stage

Adult, Pregnancy

Participants

Adults, age 18 and older, and pregnant women

Selection Rationale

This is a questionnaire that has been published in the peer-reviewed literature and is brief and easy to use.

Language

Dutch, English

Standards
StandardNameIDSource
Common Data Elements (CDE) Genomic Medicine Implementation Pharmacogenomics Awareness 7408773 CDE Browser
Derived Variables

None

Process and Review

Not applicable

Source

Daud, A. N. A., Bergsma, E. L., Bergman, J. E. H., De Walle, H. E. K., Kerstjens-Frederikse, W. S., Bijker, B. J., . . . Wilffert, B. (2017). Knowledge and attitude regarding pharmacogenetics among formerly pregnant women in the Netherlands and their interest in pharmacogenetic research. BMC Pregnancy Childbirth, 17(1), 120.

Items 8–17, 20-21 and 23–27 from the questionnaire. Questions related to pregnancy are excluded.

General References

Vermeulen, E., Henneman, L., van El, C. G., & Cornel, M. C. (2014). Public attitudes towards preventive genomics and personal interest in genetic testing to prevent disease: a survey study. European Journal of Public Health, 24(5), 768–775.

Protocol ID

310301

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
Genomic Medicine Implementation
Measure Name

Awareness of Pharmacogenomics

Release Date

September 10, 2020

Definition

A questionnaire used to determine general knowledge about pharmacogenomics and how an individual’s genes can influence drug effectiveness.  

Purpose

Pharmacogenomics (PGx) is the role of the genome in drug response and is a tool available to healthcare providers, especially those engaged in precision medicine. Genes influence drug response, and it is important that patients have a basic understanding of genes and PGx.

Keywords

Genetic counseling, genetic testing, genomic testing, medication, pharmacogenomics, PGx