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Protocol - Patient Response to Genetic Testing

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Description

The Feelings About genomiC Testing Results (FACToR) instrument is used to measure the psychosocial impact of returning genomic findings to patients in research and clinical practice. The instrument includes 12 items and 4 subscales (negative emotions, positive emotions, uncertainty, privacy concerns) with a 5-point Likert scale.

Specific Instructions

These questions should only be administered after a preliminary question regarding whether or not the respondent has received genetic test results.

Protocol

YOUR FEELINGS ABOUT GENETIC TEST RESULTS

Copyright 2012, University of Washington

Do not copy, distribute, or use without written permission.

The following questions ask about how you felt after receiving your genetic test results. Please indicate how much you had each specific feeling in the past week by circling the one answer for each question: not at all, a little, somewhat, a good deal, or a great deal.

1. How upset did you feel about your genetic test result?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

2. How happy did you feel about your genetic test result?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

3. How anxious or nervous did you feel about your genetic test result?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

4. How relieved did you feel about your genetic test result?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

5. How sad did you feel about your genetic test result?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

6. How frustrated did you feel about recommendations for your care based on the genetic test result?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

7. How uncertain did you feel about what your genetic test result means for you?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

8. How uncertain did you feel about what your genetic test result means for your child(ren) and/or family’s risk of disease?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

9. How much did you feel that you understood clearly your choices for care based on the genetic test result?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

10. How concerned did you feel that your genetic test result would affect your ability to get or keep health insurance?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

11. How helpful was the information you received from your genetic test result in planning for the future?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

12. How concerned did you feel that your genetic test result might make it hard for you to get a job or keep a job?

0[ ]not at all

1[ ]a little

2[ ]somewhat

3[ ]a good deal

4[ ]a great deal

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

Participants

Age 18 and older

Selection Rationale

The Feelings About genomiC Testing Results (FACToR) is easy to administer, takes just a few minutes to complete, and has good test-retest reliability of all four subscales. 

Language

English

Standards
StandardNameIDSource
caDSR Common Data Elements (CDE) Genomic Medicine Implementation Feelings About genomiC Testing Results Assessment Scale 7409071 CDE Browser
Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Feelings About genomiC Testing Results (FACToR)

Source

Li, M., Bennette, C. S., Amendola, L. M., Ragan, H. M., Heagarty, P., Conmstock, B., Tarczy-Hornoch, P., Fullerton, S.M., Regier, D.A., Burke, W., Trinidad, S.B., Jarvik, G.P., Vennstra, D.L., Patrick, D. L. (2018). The Feelings About genomiC Testing Results (FACToR) Questionnaire: Development and preliminary validation. Journal of Genetic Counseling, 28, 477–490.

General References

Niu, X., Amendola, L. M., Hart, R., Bennette, C. S., Heagerty, P., Horike-Pyne, M., Trinidad, S. B., Rosenthal, E. A., Comstock, B., Nefcy, C., Hisam, F. M., Bennett, R. L., Grady, W. M., Gallego, C. J., Tarczy-Hornoch, P., Fullerton, S. M., Burke, W., Regier, D. A., Dorschner, M. O., Shirts, B. H., Robertson, P. D., Nickerson, D. A., Patrick, D. L., Jarvik, G. P., & Veenstra, D. L.(2019). Clinical exome sequencing vs. usual care for hereditary colorectal cancer diagnosis: A pilot comparative effectiveness study. Contemporary Clinical Trials, 84, 105820.

Protocol ID

310901

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX310901_Patient_Response_Genetic_Testing_Result_Concern_Affect_Insurance
PX310901100000 (In the past week) How concerned did you more
feel that your genetic test result would affect your ability to get or keep health insurance? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Concern_Job
PX310901120000 (In the past week) How concerned did you more
feel that your genetic test result might make it hard for you to get a job or keep a job? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Feel_Uncertain
PX310901070000 (In the past week) How uncertain did you more
feel about what your genetic test result means for you? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Feel_Uncertain_Family
PX310901080000 (In the past week) How uncertain did you more
feel about what your genetic test result means for your child(ren) and/or family's risk of disease? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Happy
PX310901020000 (In the past week) How happy did you feel more
about your genetic test result? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Helpful_Planning_Future
PX310901110000 (In the past week) How helpful was the more
information you received from your genetic test result in planning for the future? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Nervous
PX310901030000 (In the past week) How anxious or nervous more
did you feel about your genetic test result? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Recommended_Care_Frustrated
PX310901060000 (In the past week) How frustrated did you more
feel about recommendations for your care based on the genetic test result? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Relief
PX310901040000 (In the past week) How relieved did you feel more
about your genetic test result? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Sad
PX310901050000 (In the past week) How sad did you feel more
about your genetic test result? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Understand_Care_Choice
PX310901090000 (In the past week) How much did you feel more
that you understood clearly your choices for care based on the genetic test result? show less
N/A
PX310901_Patient_Response_Genetic_Testing_Result_Upset
PX310901010000 (In the past week) How upset did you feel more
about your genetic test result? show less
N/A
Genomic Medicine Implementation
Measure Name

Patient Response to Genetic Testing

Release Date

September 10, 2020

Definition

An assessment used to measure how a patient responds to genetic test results. 

Purpose

An instrument used to measure the psychosocial impact of returning genomic findings to patients in research and clinical practice.

Keywords

Genetic counseling, genetic testing, genomic testing, scale, Feelings About genomiC Testing Results, FACToR

Measure Protocols
Protocol ID Protocol Name
310901 Patient Response to Genetic Testing
Publications

There are no publications listed for this protocol.