ORCID
- Jones, Ray: 0000-0002-2963-3421
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.
DOI
10.3390/cancers13102404
Publication Date
2021-05-16
Publication Title
Cancers
Volume
13
Issue
10
ISSN
2072-6694
Embargo Period
2021-10-26
Organisational Unit
School of Nursing and Midwifery
First Page
2404
Last Page
2404
Recommended Citation
Goodman, S., Skirton, H., Jackson, L., & Jones, R. (2021) 'Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study', Cancers, 13(10), pp. 2404-2404. Available at: https://doi.org/10.3390/cancers13102404