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Protocol - Information Sources for Patients after Return of Results

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Description

After a patient receives genetic test results, the patient is asked which sources were used to find out more about the genetic test results. Then the patient completes a scale of 1–5 based on the perceived usefulness of the information from the source. The patient is also encouraged to list any websites that were helpful. 

Specific Instructions

The following preliminary question(s), regarding whether or not the respondent has received genetic test results are recommended before the follow-up question. 

Did you receive a genetic test result for yourself or your child?

[ ] Yes

[ ] No

If so, did the result provide a genetic diagnosis (was there a positive genetic test result)?

[ ] Yes

[ ] No

INSTRUCTIONS: Please administer at follow-up 2, 5–7 months post–Return of Results (ROR). Please administer this survey to all patients/parents who received diagnostic or uncertain variance of unknown significance (VUS) findings with regards to the primary indication for testing, as well as to participants who received secondary findings.

Protocol

1. Which of the following sources, if any, did you use to find more information about the genetic test results you received at your last visit? Please rate the usefulness of the sources you used.

1 = not useful at all, 5 = very useful

[ ] Family or friends

  1     2     3     4     5

[ ] Facebook

  1     2     3     4     5

[ ] Support groups

  1     2     3     4     5

[ ] My/my child’s other doctors

  1     2     3     4     5

[ ] Internet search (i.e., Google, PubMed, etc.)

  1     2     3     4     5

[ ] Books and other print media

  1     2     3     4     5

[ ] Information provided by the doctor who ordered my/my child’s genetic test

  1     2     3     4     5

[ ] Other (please specify)_________

  1     2     3     4     5

[ ] None

If you used the Internet to search for information about the results, please list any websites you found helpful.

Protocol Name from Source

Information Seeking V2 from the Clinical Sequencing Evidence-Generating Research (CSER) Adult Patient Measures - Post-Return of Results Follow-up #2 (5-7 months post-Return of Results)

Availability

Available

Personnel and Training Required

The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews. The interviewer should be trained to prompt respondents further if a “don’t know” response is provided.

Note: Also administered as an online questionnaire.

Equipment Needs

The PhenX Working Group acknowledges these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil instrument). Computer software is necessary to develop computer-assisted instruments. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.

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 or interviewer-administered questionnaire

Life Stage

Adult

Participants

Adult patients or parents/guardians of a pediatric patient after genetic testing

Selection Rationale

This item is part of a questionnaire recommended by a consortium of genomic experts and is low burden. 

Language

English

Standards
StandardNameIDSource
Common Data Elements (CDE) Genomic Medicine Implementation Patient Genetic Testing Information Source Assessment Text 7408775 CDE Browser
Derived Variables

None

Process and Review

Not applicable

Source

Clinical Sequencing Evidence-Generating Research (CSER) Adult Patient Measures - Post–Return of Results Follow-up #2 (5–7 months post–Return of Results)

General References

Read, C. Y., Perry, D. J., & Duffy, M. E. (2005). Design and psychometric evaluation of the Psychological Adaptation to Genetic Information Scale. Journal of Nursing Scholarship, 37(3), 203–208.

Protocol ID

310601

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

Information Sources for Patients after Return of Results

Release Date

September 10, 2020

Definition

A question used to determine which sources a patient used to find more information about his or her genetic test results and the patient’s perception of usefulness of the information.

Purpose

Patients often seek out additional information about their genetic test results from various sources, including family, friends, other healthcare professionals, and the Internet. The purpose is to understand where patients are getting their information, whether these sources are reliable, and if there is need to redirect them to more reliable sources.

Keywords

Test results, genetic testing, genomic medicine, Clinical Sequencing Evidence-Generating Research CSER, return of results, RoR, resources