Development of an ovarian cancer symptom awareness tool with tailored content for women at increased genetic risk of developing ovarian cancer

Doctoral thesis English OPEN
Smits, Stephanie
  • Subject: R1

In the absence of a routine ovarian screening programme, ovarian cancer symptom awareness is a potential route to earlier symptomatic presentation and disease diagnosis. However, materials to support this strategy may need to be tailored according to risk. The work presented in this thesis identified the contributors to anticipated symptomatic presentation for women at increased genetic risk of ovarian cancer.\ud A mixed-method approach was used to identify determinants of anticipated symptomatic presentation, and included a systematic search of existing ovarian cancer symptom awareness tools, cross-sectional surveys with two risk populations and qualitative interviews with women at increased genetic risk. Additionally, a systematic search and a virtual reference group were used to identify symptom content. Cognitive interviews were undertaken to pilot the draft tool for acceptability and usability with a sample of potential users and providers.\ud Endorsing more benefits than barriers to presentation was associated with earlier anticipated presentation in both risk populations; however, differential effects of underlying health beliefs on anticipated presentation were also identified. In those at increased genetic risk, emotional (worry) rather than cognitive aspects of risk perception predominate in influencing earlier anticipated presentation. Interviews with women at increased genetic risk revealed that personal experience with ovarian cancer shaped beliefs about the disease. The identified health beliefs were incorporated into OvSTAT (ovarian cancer symptom awareness tool), with core content applicable for women from the general population and tailored content to address the specific needs of women at increased genetic risk. OvSTAT was well received in user testing.\ud Overall, the findings suggest that the emotional representation of risk distinguishes earlier anticipated presentation in women at increased genetic risk from that in the general population. OvSTAT could be a mechanism through which appropriate symptomatic presentation is improved, by helping women to manage worry associated with their increased genetic risk status.
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