| McAllister, Marion 2025. Genetic counseling outcomes, patient empowerment, and the genetic counseling outcome scale. Deem, Michael J., Grubs, Robin E. and Farrow, Emily G., eds. The Oxford Handbook of Genetic Counseling, Oxford: Oxford University Press, pp. 619-635. (10.1093/oxfordhb/9780190069964.013.0030) |
Abstract
Historically, there has been little consensus about the best way to measure patient outcomes from genetic counseling. Diverse outcome measures have been used, ranging from knowledge and information recall to psychological distress and perceived personal control. Moreover, many of the outcome measures that have been used have undergone limited psychometric validation. Extensive qualitative research with patients and providers of genetic counseling services in the United Kingdom led to development of a model of “empowerment,” summarizing the patient benefits. Empowerment comprises five dimensions: cognitive, decisional, and behavioral control; emotional regulation; and hope. Empowerment was operationalized to create a novel 24-item patient-reported outcome measure called the Genetic Counseling Outcomes Scale (GCOS-24), which was shown to have good psychometric properties including internal consistency, reliability, and responsiveness to change over time. This chapter will examine the importance of measuring patient outcomes in genetic counseling and the development of a validated tool to evaluate patient empowerment.
| Item Type: | Book Section |
|---|---|
| Date Type: | Publication |
| Status: | Published |
| Schools: | Schools > Medicine |
| Publisher: | Oxford University Press |
| ISBN: | 9780190069964 |
| Last Modified: | 09 Oct 2025 08:30 |
| URI: | https://orca.cardiff.ac.uk/id/eprint/181567 |
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