Knowledge and expectations of women undergoing cancer genetic risk assessment: a qualitative analysis of free-text questionnaire comments

Phelps, Ceri, Wood, Fiona Clare ORCID: https://orcid.org/0000-0001-7397-4074, Bennett, P., Brain, Katherine Emma ORCID: https://orcid.org/0000-0001-9296-9748 and Gray, Jonathon 2007. Knowledge and expectations of women undergoing cancer genetic risk assessment: a qualitative analysis of free-text questionnaire comments. Journal of Genetic Counselling 16 (4) , pp. 505-514. 10.1007/s10897-007-9086-3

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Abstract

Individuals undergoing cancer genetic risk assessment have been found to have a poor understanding of the process, which may affect how well they cope with learning their risk. This paper reports free-text data from questionnaires completed by women undergoing a randomised controlled trial of a psychological intervention. Of the 268 women undergoing genetic assessment for familial breast/ovarian cancer risk who were invited to take part in the trial, 157 women returned research questionnaires. Of these, 97 women provided free-text comments upon referral to a cancer genetics clinic, 62 provided comments whilst waiting for risk information (average, moderate or high), and 36 women provided comments following notification of risk. This paper reports a thematic analysis of the free-text data. Themes reflected individuals' poor knowledge and uncertainty about genetic risk assessment. How well individuals responded to learning their risk depended upon whether expectations had been met. Regardless of risk, individuals undergoing cancer genetic risk assessment are likely to benefit from increased information about its process and timescales, and access to increased psychological support. Free-text comments can provide valuable data about individuals' expectations and knowledge of genetics services.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Subjects:	R Medicine > R Medicine (General)
Uncontrolled Keywords:	Adaptation, Psychological, Adult, Breast Neoplasms / genetics, Breast Neoplasms / psychology*, Decision Making, Defense Mechanisms, Female, Genetic Counseling / psychology*, Genetic Predisposition to Disease / genetics, Genetic Predisposition to Disease / psychology, Genetic Testing / psychology*, Health Knowledge, Attitudes, Practice*, Humans, Mass Screening / psychology, Middle Aged, Ovarian Neoplasms / genetics, Ovarian Neoplasms / psychology*, Pamphlets, Personality Inventory, Questionnaires*, Risk Assessment, Wales
Additional Information:	Publication Types Randomized Controlled Trial Research Support, Non-U.S. Gov't Full Text Sources Springer Ovid Technologies, Inc. ProQuest Other Literature Sources COS Scholar Universe Labome Researcher Resource - ExactAntigen/Labome Medical Breast Cancer - MedlinePlus Health Information Genetic Counseling - MedlinePlus Health Information Genetic Testing - MedlinePlus Health Information Ovarian Cancer - MedlinePlus Health Information
Publisher:	Springer
ISSN:	1059-7700
Last Modified:	25 Oct 2022 09:21
URI:	https://orca.cardiff.ac.uk/id/eprint/58189

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