3. Patient information needs about genetic cancer predisposition risks (220)
Alison Metcalfe, Senior Research Fellow, School of Health Sciences, The University of Birmingham, Birmingham, United Kingdom.
Co-authors: Julie Werrett & Lucy Burgess
Abstract:
This study aimed to identify the information needs of patients referred because of their concerns about a genetic predisposition to cancer, and explore how information needs and other relevant variables affected risk perception and cancer worry. Increased insight into the influences on inherited cancer risk perception will enable the development of tailored information leading to improved decision-making for those at high risk, whilst those at lower risk can have their anxiety reduced without referral to genetics services. Patients referred for genetic counselling because of concerns about an inherited predisposition to breast, ovarian or colorectal cancer were stratified by risk level; high, moderate or population. They were surveyed with a validated questionnaire 2 weeks prior to receiving a personalised genetic risk assessment. The structured questionnaire was designed to explore participants’ information needs depending on a range of demographic and psychosocial factors. 518 patients participated in equal proportions across risk categories and cancer type. Irrespective of actual or perceived risk level, age or educational background, priorities in the type of information required were similar. Greatest emphasis focused on information provision about how risk was assessed. Least important was acquiring an understanding about genes. Referring health professionals were considered the most suitable to provide guidance about information sources, but many were unable to provide advice if asked. Participants reported difficulties finding any information about genetic cancer predisposition. These results provide details of peoples’ information needs to inform the development of patient information about genetic cancer predisposition to inform their understanding and subsequent decision-making. Specialist breast and bowel care nurses are often involved in referring patients for familial risk assessment and the findings have important implications for the care and support they provide.
Source of Funding: UK - Higher Education Institution
BUPA Foundation
Amount in Funding: 50,001 - 100,000
Biography:
Senior Research Fellow working at the University of Birmingham lead a programme of research on the psychosocial implications of developments in genetics for mainstream healthcare.