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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: _______________________________________

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

Lifestage

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

None

Process and Review

Not applicable

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.

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
PX310301_Awareness_Pharmacogenomics_Differences_Body_Response_Medication
PX310301040000 Do you think that there could be differences more
between people in their body’s response to medication due to differences in their DNA? show less
N/A
PX310301_Awareness_Pharmacogenomics_DNA_Information_Future_Treatment
PX310301110000 Suppose that your DNA is associated with the more
effects of your medication. Would you allow your doctor to use the information about your DNA in your future treatment? show less
N/A
PX310301_Awareness_Pharmacogenomics_DNA_Knowledge_Improve_Treatment
PX310301060000 Do you think that knowing the differences in more
DNA that are associated with the effect of medication will help improve (future) drug treatment? show less
N/A
PX310301_Awareness_Pharmacogenomics_DNA_Knowledge_Reduce_Side_Effects
PX310301050000 Do you think that determining the more
differences in DNA that are associated with the effect of medication will help to reduce (future) side effects? show less
N/A
PX310301_Awareness_Pharmacogenomics_DNA_Test_Before_Prescription
PX310301120000 Are you willing to have a DNA test before a more
certain medication is prescribed? show less
N/A
PX310301_Awareness_Pharmacogenomics_DNA_Test_Information_Source
PX310301170100 Which method of getting information about more
DNA tests for pharmacogenetics do you prefer (multiple answers are correct)? show less
N/A
PX310301_Awareness_Pharmacogenomics_DNA_Test_Information_Source_Other
PX310301170200 Which method of getting information about more
DNA tests for pharmacogenetics do you prefer (multiple answers are correct)? Otherwise, please describe: show less
N/A
PX310301_Awareness_Pharmacogenomics_DNA_Test_Knowledge
PX310301160000 Would you like to learn more about DNA tests more
for pharmacogenetics? show less
N/A
PX310301_Awareness_Pharmacogenomics_Heard
PX310301070000 Before you received this questionnaire, have more
you ever heard of the term pharmacogenetics? show less
N/A
PX310301_Awareness_Pharmacogenomics_Meaning
PX310301080000 Before you received this questionnaire, did more
you know the meaning of pharmacogenetics? show less
N/A
PX310301_Awareness_Pharmacogenomics_Medication_Stopped_Did_Not_Work
PX310301030000 Have you ever stopped taking a medication more
because you felt that it did not work? show less
N/A
PX310301_Awareness_Pharmacogenomics_Partake_Future_Research
PX310301140000 Would you take part in future research more
related to pharmacogenetics? show less
N/A
PX310301_Awareness_Pharmacogenomics_Partake_Future_Research_Reason_Decline
PX310301150100 If not, or in doubt, what is the reason more
(multiple answers are correct)? show less
N/A
PX310301_Awareness_Pharmacogenomics_Partake_Future_Research_Reason_Decline_Other
PX310301150200 If not, or in doubt, what is the reason more
(multiple answers are correct)? Otherwise, please describe show less
N/A
PX310301_Awareness_Pharmacogenomics_Pharmacogenomic_Information_Use_Treatment
PX310301130000 Do you want your pharmacogenetic information more
to be used in your treatment with medicines? show less
N/A
PX310301_Awareness_Pharmacogenomics_Side_Effect_Medication_Experience
PX310301010000 Have you ever experienced a side effect of a more
medication? show less
N/A
PX310301_Awareness_Pharmacogenomics_Side_Effect_Medication_Stopped
PX310301020000 Have you ever stopped taking a medication more
because of the side effects of this medication? show less
N/A
PX310301_Awareness_Pharmacogenomics_Test
PX310301090000 Have you ever had a pharmacogenetic test? In more
a pharmacogenetic test, your hereditary traits related to effect of a medication will be examined show less
N/A
PX310301_Awareness_Pharmacogenomics_Test_Other_Person
PX310301100000 Do you know someone who has had a more
pharmacogenetic test? show less
N/A
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

Measure Protocols
Protocol ID Protocol Name
310301 Awareness of Pharmacogenomics
Publications

There are no publications listed for this protocol.