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Patient reported outcomes and patient empowerment in clinical genetics services

McAllister, Marion and Dearing, Audrey 2014. Patient reported outcomes and patient empowerment in clinical genetics services. Clinical Genetics 88 (2) , pp. 114-121. 10.1111/cge.12520

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Evaluation of clinical genetics services (CGS), including genetic counseling and genetic testing, has been problematic. Patient mortality and morbidity are unlikely to be directly improved by interventions offered in CGS. Patient-reported outcomes (PROs) are not routinely measured in CGS evaluation, but this may change as patient-reported outcome measures (PROMs) become a key part of how healthcare services are managed and funded across the world. However, there is no clear consensus about which PROMs are most useful for CGS evaluation. This review summarizes the published research on how PROs from CGS have been measured and how patients may benefit from using those services, with a focus on patient empowerment. Many patient benefits (PROs) identified repeatedly in the research literature can be re-interpreted within a patient empowerment framework. Other important PROs identified include family functioning, social functioning, altruism, sense of purpose, enabling development of future research and treatment/participating in research. Well-validated measures are available to capture (dimensions of) patient empowerment. Although generic measures of family functioning are available, suitable measures capturing social functioning, development of future treatments, and altruism were not identified in this review. Patient empowerment provides one useful approach to measuring PROs from CGS.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Subjects: R Medicine > R Medicine (General)
Uncontrolled Keywords: clinical genetics services;genetic counseling;patient benefits;patient empowerment;patient-reported outcome measures;patient-reported outcomes
Publisher: Wiley-Blackwell
ISSN: 0009-9163
Date of Acceptance: 6 October 2014
Last Modified: 13 Jun 2019 09:23

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