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Protocol - Regret about Healthcare Decisions

Description

The Decision Regret Scale is a 5-item Likert scale. Respondents read each statement and use the response options to indicate how much they agree or disagree with the statement. The scale numbers from strongly agree (1) to strongly disagree (5).

Specific Instructions

In a short introductory statement, respondents should be asked to reflect on a specific past healthcare decision and then are asked about the extent to which they agree or disagree with the statements in the Decision Regret Scale by indicating a number from 1 (strongly agree) to 5 (strongly disagree) that best indicates their level of agreement.

Regret is measured at a point in time when the respondent can reflect on the effects of the decision. In the context of genomic implementation, the relevant decision might be the decision to participate in a research study, to have a particular test performed (such as genome sequencing or exome sequencing) or to receive certain results (such as agreeing to receive secondary findings). The decision should be a discreet decision that the respondent made; an ongoing process like a diagnostic work-up or a treatment plan would be a poor fit for this tool.

Availability

Protocol

These tools are protected by copyright but are freely available for you to use, provided you cite the reference in any questionnaires or publications.

Please think about the decision you made about genetic testing, genomic testing, and/or receiving additional genetic information; after talking to your [doctor, surgeon, nurse, health professional, etc.]. Please show how you feel about these statements by circling a number from 1 (strongly agree) to 5 (strongly disagree).

1. It was the right decision

1[ ]Strongly Agree

2[ ]Agree

3[ ]Neither Agree Nor Disagree

4[ ]Disagree

5[ ]Strongly Disagree

2. I regret the choice that was made

1[ ]Strongly Agree

2[ ]Agree

3[ ]Neither Agree Nor Disagree

4[ ]Disagree

5[ ]Strongly Disagree

3. I would go for the same choice if I had to do it over again

1[ ]Strongly Agree

2[ ]Agree

3[ ]Neither Agree Nor Disagree

4[ ]Disagree

5[ ]Strongly Disagree

4. The choice did me a lot of harm

1[ ]Strongly Agree

2[ ]Agree

3[ ]Neither Agree Nor Disagree

4[ ]Disagree

5[ ]Strongly Disagree

5. The decision was a wise one

1[ ]Strongly Agree

2[ ]Agree

3[ ]Neither Agree Nor Disagree

4[ ]Disagree

5[ ]Strongly Disagree

Scoring:

Subtract 1 from each item, then multiple by 25. Sum all the scores. A total score of 0 indicates no regret, and 100 indicates high regret.

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, Senior

Participants

This scale has been used for studies of adults with cancer and osteoporosis, but the Working Group members feel it could be used on all adults aged 18 and older.

Selection Rationale

The scale showed good internal consistency and correlated well with scales of decision satisfaction and decision conflict.

Language

English

Standards

Standard	Name	ID	Source

Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Decision Regret Scale

Source

O’Connor, A. M. (1996). User manual—Decision Regret Scale [document on the Internet]. Ottawa, Ontario, Canada: Ottawa Hospital Research Institute; © 1996 [modified 2003] 3 pp. Available from

https://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_Regret_Scale.pdf

General References

Brehaut, J. C., O’Connor, A. M., Wood, T. J., Hack, T. F., Siminoff, L., Gordon, E., & Feldman-Stewart, D. (2003). Validation of a Decision Regret Scale. Medical Decision Making, 23(4), 281–292.

Lawal, T. A., Lewis, K. L., Johnston, J. J., Heidlebaugh, A. R., Nq, D., Gaston-Johansson, F. G., Klein, W. M. P., & Biersecker, L. G. (2018). Disclosure of cardiac variants of uncertain results in an exome cohort. Clinical Genetics, 93(5), 1022–1029.

Linderman, M. D., Sanderson, S. C., Bashir, A., Diaz, G. A., Kasarskis, A., Zinberg, R., Mahajan, M., Suckiel, S. A. , Zweig, M., Schadt, E. E. (2018). Impacts of incorporating personal genome sequencing into graduate genomics education: A longitudinal study over three course years. BMC Medical Genomics, 11, 5.

Roberts, J. S., Gornick, M. A., Carere, D. A., Uhlmann, W. R., Ruffin, M. T., & Green, R. C. (2017). Direct-to-consumer genetic testing: User motivations, decision making, and perceived utility of results. Public Health Genomics, 20(1), 36–45.

Protocol ID

311301

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX311301_Genomic_Medicine_Regret_Decisions_Choice_Harm
	PX311301040000	Please think about the decision you made more about genetic testing, genomic testing, and/or receiving additional genetic information; after talking to your [doctor, surgeon, nurse, health professional, etc.]. Please show how you feel about these statemen show less	N/A
PX311301_Genomic_Medicine_Regret_Decisions_Decision_Wise
	PX311301050000	Please think about the decision you made more about genetic testing, genomic testing, and/or receiving additional genetic information; after talking to your [doctor, surgeon, nurse, health professional, etc.]. Please show how you feel about these statemen show less	N/A
PX311301_Genomic_Medicine_Regret_Decisions_Regret_Choice
	PX311301020000	Please think about the decision you made more about genetic testing, genomic testing, and/or receiving additional genetic information; after talking to your [doctor, surgeon, nurse, health professional, etc.]. Please show how you feel about these statemen show less	N/A
PX311301_Genomic_Medicine_Regret_Decisions_Right_Decision
	PX311301010000	Please think about the decision you made more about genetic testing, genomic testing, and/or receiving additional genetic information; after talking to your [doctor, surgeon, nurse, health professional, etc.]. Please show how you feel about these statemen show less	N/A
PX311301_Genomic_Medicine_Regret_Decisions_Same_Choice
	PX311301030000	Please think about the decision you made more about genetic testing, genomic testing, and/or receiving additional genetic information; after talking to your [doctor, surgeon, nurse, health professional, etc.]. Please show how you feel about these statemen show less	N/A

Genomic Medicine Implementation

Measure Name

Regret about Healthcare Decisions

Release Date

September 10, 2020

Definition

If the individual experiences feelings of regret or remorse after a healthcare decision.

Purpose

This scale is used to determine if the individual has feelings of regret or remorse after a healthcare decision.

Keywords

Decision, healthcare, regret, remorse, scale

Measure Protocols

Protocol ID	Protocol Name
311301	Regret about Healthcare Decisions

Publications

There are no publications listed for this protocol.