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Protocol - Patient Empowerment After Genetic Services and Counseling - Genomics Outcome Scale (GOS)

Description

The Genomics Outcome Scale (GOS) is a 6-item version of the 24-item Genetic Counselling Outcome Scale (GCOS-24). The survey focuses on empowerment. The GOS includes a 5-point Likert scale going from how much the individual strongly disagrees (1) to strongly agrees (5) with the statement.

Specific Instructions

The 24-item Genetic Counseling Outcome Scale (GCOS) should be used to evaluate empowerment following genetic counseling. The 6-item Genomics Outcome Scale (GOS) is shorter and more broadly applicable, such as in circumstances where a non-genetics provider has disclosed a result or when results are disclosed online.

Availability

Limited Availability

Protocol

For each statement below, circle the number next to how much you agree or disagree with the statement.

I can explain what the condition means to people outside my family who may need to know (e.g., teachers, social workers).

[ ] 1 Strongly Disagree

[ ] 2 Disagree

[ ] 3 Neither Agree nor Disagree

[ ] 4 Agree

[ ] 5 Strongly Agree

I know who else in my family might be at risk for this condition.

[ ] 1 Strongly Disagree

[ ] 2 Disagree

[ ] 3 Neither Agree nor Disagree

[ ] 4 Agree

[ ] 5 Strongly Agree

When I think about the condition in my family, I get upset.

[ ] 1 Strongly Disagree

[ ] 2 Disagree

[ ] 3 Neither Agree nor Disagree

[ ] 4 Agree

[ ] 5 Strongly Agree

I know what I can do to change how this condition affects me/my children.

[ ] 1 Strongly Disagree

[ ] 2 Disagree

[ ] 3 Neither Agree nor Disagree

[ ] 4 Agree

[ ] 5 Strongly Agree

I am able to make plans for my future.

[ ] 1 Strongly Disagree

[ ] 2 Disagree

[ ] 3 Neither Agree nor Disagree

[ ] 4 Agree

[ ] 5 Strongly Agree

I can make decisions about the condition that may change my future or my child(ren)’s future.

[ ] 1 Strongly Disagree

[ ] 2 Disagree

[ ] 3 Neither Agree nor Disagree

[ ] 4 Agree

[ ] 5 Strongly Agree

Reprinted from European Journal of Medical Genetics, Volume 62, Grant, P. E., Pampaka, M., Payne, K., Clarke, A., & McAllister, M., Developing a short-form of the Genetic Counselling Outcome Scale: The Genomics Outcome Scale, pages 324-334, Copyright 2019, with permission from Elsevier.

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 correlation between the 24-item Genetic Counselling Outcome Scale (GCOS-24) and Genomics Outcome Scale (GOS) scores is good (r = .838 at 99% confidence), suggesting that GOS maintains the ability of GCOS-24 to capture empowerment while providing a less burdensome scale for respondents.

Language

English

Standards

Standard	Name	ID	Source

Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Genomics Outcome Scale (GOS)

Source

Grant, P. E., Pampaka, M., Payne, K., Clarke, A., & McAllister, M. (2019). Developing a short-form of the Genetic Counselling Outcome Scale: The Genomics Outcome Scale. European Journal of Medical Genetics, 62(5), 324–334.

Copyright 2019, Elsevier. Posted with permission from Elsevier.

General References

McAllister, M., Wood, A., Dunn, G., Shiloh, S., & Todd, C. (2011). The Genetic Counseling Outcome Scale: A new patient-reported outcome measure for clinical genetics services. Clinical Genetics, 79(5), 413–424

Yuen, J., Lee, S. Y., Courtney, E., Lim, J., Soh, H., Li, S. T., Chen, Y., McAllister, M., Fenwick, E. K., & Ngeow, J. (2020). Evaluating empowerment in genetic counseling using patient-reported outcomes.

Clinical Genetics, 97(2), 246–256.

Protocol ID

310801

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX310801_Patient_Empowerment_Genetic_Services_Counseling_Condition_Affect_Offspring
	PX310801040000	I know what I can do to change how this more condition affects me/my children. show less	N/A
PX310801_Patient_Empowerment_Genetic_Services_Counseling_Condition_Decisions_Offspring_Future
	PX310801060000	I can make decisions about the condition more that may change my future or my child(ren)'s future. show less	N/A
PX310801_Patient_Empowerment_Genetic_Services_Counseling_Condition_Explain_Others
	PX310801010000	I can explain what the condition means to more people outside my family who may need to know (e.g., teachers, social workers). show less	N/A
PX310801_Patient_Empowerment_Genetic_Services_Counseling_Condition_Family_Risk
	PX310801020000	I know who else in my family might be at more risk for this condition. show less	N/A
PX310801_Patient_Empowerment_Genetic_Services_Counseling_Condition_Family_Upset
	PX310801030000	When I think about the condition in my more family, I get upset. show less	N/A
PX310801_Patient_Empowerment_Genetic_Services_Counseling_Plan_Future
	PX310801050000	I am able to make plans for my future.	N/A

Genomic Medicine Implementation

Measure Name

Patient Empowerment After Genetic Services and Counseling

Release Date

September 10, 2020

Definition

A patient-reported outcome used to evaluate patient empowerment after he or she has received genetic counseling and testing services.

Purpose

This tool is used to assess patient empowerment, which is how an individual uses the results from genetic services to benefit himself or herself and his or her family.

Keywords

Empowerment, genetic counseling, genetic testing, genomic testing, outcomes, scale

Measure Protocols

Protocol ID	Protocol Name
310801	Patient Empowerment After Genetic Services and Counseling - Genomics Outcome Scale (GOS)

Publications

There are no publications listed for this protocol.