Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study

SIMPLE SUMMARY: Families with an inherited high risk of bowel cancer may struggle to share information about their diagnosis. This means that relatives are not always aware of their increased risk of cancer or able to access screening for the early detection of cancer. Through this study, we aimed to help such families by creating a website where patients could share confidential information with their relatives securely online. Following a survey and telephone interviews with affected individuals, the content of the website was developed to suit the needs of families. Website function was tested with patients to check feasibility and acceptability. Most participants wanted more information to support their adaptation to the diagnosis and help inform their relatives. This study demonstrates how health professionals can improve access to genetic testing and cancer screening in families at high risk of cancer, thus reducing morbidity and mortality. ABSTRACT: Individuals with pathogenic variants in genes predisposing to bowel cancer are encouraged to share this information within their families. Close relatives at 50% risk can have access to bowel cancer surveillance. However, many relatives remain unaware of their vulnerability or have insufficient information. We investigated the feasibility and acceptability of using a secure website to support information sharing within families at high risk of bowel cancer. Patients (n = 286) answered an anonymous cross-sectional survey, with 14 participating in telephone interviews. They reported that the diagnosis had a profound effect on them and their family relationships, and consequently desired more support from health professionals. Website content was created in response to the preferences of survey and interview participants. Reactions to the website from 12 volunteers were captured through remote usability testing to guide further refinement of the website. Participants welcomed the opportunity to store and share personal information via the website and wanted more information and help informing their relatives about the diagnosis. Important website topics were: healthy lifestyle; genetic testing; and how to talk to children about the diagnosis. A website providing online access to confidential documents was both feasible and acceptable and could translate into increased uptake of cancer surveillance, resulting in lower morbidity and mortality in these families.