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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

Protocol Name from Source

Feelings About genomiC Testing Results (FACToR)

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

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
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

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
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