Protocol - Patient Response to Genetic Testing
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.
Availability
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
Personnel and Training Required
None
Equipment Needs
None
Requirements
| Requirement Category | Required |
|---|---|
| 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
| Standard | Name | ID | Source |
|---|
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 ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX310901_Patient_Response_Genetic_Testing_Result_Concern_Affect_Insurance | ||||
| PX310901100000 | (In the past week) How concerned did you more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Concern_Job | ||||
| PX310901120000 | (In the past week) How concerned did you more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Feel_Uncertain | ||||
| PX310901070000 | (In the past week) How uncertain did you more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Feel_Uncertain_Family | ||||
| PX310901080000 | (In the past week) How uncertain did you more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Happy | ||||
| PX310901020000 | (In the past week) How happy did you feel more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Helpful_Planning_Future | ||||
| PX310901110000 | (In the past week) How helpful was the more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Nervous | ||||
| PX310901030000 | (In the past week) How anxious or nervous more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Recommended_Care_Frustrated | ||||
| PX310901060000 | (In the past week) How frustrated did you more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Relief | ||||
| PX310901040000 | (In the past week) How relieved did you feel more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Sad | ||||
| PX310901050000 | (In the past week) How sad did you feel more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Understand_Care_Choice | ||||
| PX310901090000 | (In the past week) How much did you feel more | N/A | ||
| PX310901_Patient_Response_Genetic_Testing_Result_Upset | ||||
| PX310901010000 | (In the past week) How upset did you feel more | N/A | ||
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.