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

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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.

Protocol

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

1. 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

2. 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

3. 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

4. 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

5. I am able to make plans for my future.

1[ ]Strongly Disagree

2[ ]Disagree

3[ ]Neither Agree nor Disagree

4[ ]Agree

5[ ]Strongly Agree

6. 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.

Protocol Name from Source

Genomics Outcome Scale (GOS)

Availability

Limited Availability

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 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
StandardNameIDSource
Common Data Elements (CDE) Genomic Medicine Implementation Genomics Outcome Scale Assessment Scale 7409069 CDE Browser
Derived Variables

None

Process and Review

Not applicable

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 IDVariable DescriptiondbGaP Mapping
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