Protocol - Information Sources for Patients after Return of Results

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.

Availability

Available

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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.

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 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 or interviewer-administered questionnaire

Lifestage

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

Standard	Name	ID	Source

Derived Variables

None

Process and Review

Not applicable

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)

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 ID	Variable Description	dbGaP Mapping
PX310601_Patient_Results_Information_Source
	PX310601010100	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? show less	N/A
PX310601_Patient_Results_Information_Source_Facebook
	PX310601010300	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? Facebook show less	N/A
PX310601_Patient_Results_Information_Source_Family_Friend
	PX310601010200	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? Family or Friends show less	N/A
PX310601_Patient_Results_Information_Source_Genetic_Test
	PX310601010800	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? Information provided by the doctor who ordered my/my child's genetic test show less	N/A
PX310601_Patient_Results_Information_Source_Internet
	PX310601010600	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? Internet search (i.e., Google, PubMed, etc.) show less	N/A
PX310601_Patient_Results_Information_Source_Internet_Helpful_Website
	PX310601011000	If you used the Internet to search for more information about the results, please list any websites you found helpful show less	N/A
PX310601_Patient_Results_Information_Source_Other
	PX310601010901	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? Other show less	N/A
PX310601_Patient_Results_Information_Source_Other_Detail
	PX310601010902	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? Other (please specify) show less	N/A
PX310601_Patient_Results_Information_Source_Other_Doctor
	PX310601010500	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? My/my child's other doctors show less	N/A
PX310601_Patient_Results_Information_Source_Support_Book_Print_Media
	PX310601010700	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? Books and other print media show less	N/A
PX310601_Patient_Results_Information_Source_Support_Group
	PX310601010400	Which of the following sources, if any, did more you use to find more information about the genetic test results you received at your last visit? Support groups show less	N/A

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

Measure Protocols

Protocol ID	Protocol Name
310601	Information Sources for Patients after Return of Results

Publications

There are no publications listed for this protocol.