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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 

  1. 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 

  1. 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 

  1. 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 

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

[ ] 1 Strongly Disagree  

[ ] 2 Disagree

[ ] 3 Neither Agree nor Disagree 

[ ] 4 Agree

[ ] 5 Strongly Agree 

  1. 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.

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

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
StandardNameIDSource
caDSR Common Data Elements (CDE) Genomic Medicine Implementation Genomics Outcome Scale Assessment Scale 7409069 CDE Browser
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 IDVariable DescriptiondbGaP 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.