title: Knowledge and expectations of women undergoing cancer genetic risk assessment: a qualitative analysis of free-text questionnaire comments.
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.
authors.affiliation: Institute of Medical Genetics, Cardiff University School of Medicine, Cardiff, Wales, UK. ceri.phelps@cardiffandvale.wales.nhs.uk
authors.forename: C
authors.initials: C
authors.lastname: Phelps
authors.forename: F
authors.initials: F
authors.lastname: Wood
authors.forename: P
authors.initials: P
authors.lastname: Bennett
authors.forename: K
authors.initials: K
authors.lastname: Brain
authors.forename: J
authors.initials: J
authors.lastname: Gray
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology*; D003657:Decision Making; D003674:Defense Mechanisms; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease / Q000235:genetics / Q000523:psychology; D005820:Genetic Testing / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008403:Mass Screening / Q000523:psychology; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics / Q000523:psychology*; D010174:Pamphlets; D010555:Personality Inventory; D018570:Risk Assessment; D011795:Surveys and Questionnaires; D014852:Wales