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Improving service evaluation in clinical genetics: Identifying effects of genetic diseases on individuals and families

McAllister, Marion, Payne, Katherine, Nicholls, Stuart, MacLeod, Rhona, Donnai, Dian and Davies, Linda M. 2007. Improving service evaluation in clinical genetics: Identifying effects of genetic diseases on individuals and families. Journal of Genetic Counseling 16 (1) , pp. 71-83. 10.1007/s10897-006-9046-3

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Abstract

Outcome measurement in clinical genetics is challenging. Outcome attributes used currently have been developed by service providers or adapted from measures used in other areas of healthcare. Many of the ‘patients’ in clinical genetics are healthy but at risk of developing or transmitting a condition. Usually no pharmacological or surgical treatment is offered, although information-giving is an objective of most consultations. We argue that services should be evaluated on the basis of how well they alleviate the effects of disease, from a patient perspective. This paper describes a qualitative study using seven focus groups with health professionals, patients and patient representatives. Social and emotional effects of genetics diseases were identified. Some differences emerged between the effects identified by health professionals and those identified by patients. These findings will be used to inform the evaluation of existing outcome measures and develop robust measures of outcome for clinical genetics services.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Subjects: Q Science > QH Natural history > QH426 Genetics
R Medicine > R Medicine (General)
Publisher: Human Sciences Press
ISSN: 1059-7700
Last Modified: 04 Jun 2017 04:44
URI: http://orca.cf.ac.uk/id/eprint/43764

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