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. 2021 May 16;13(10):2404.
doi: 10.3390/cancers13102404.

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

Selina Goodman  1   2 , Heather Skirton  2 , Leigh Jackson  1 , Ray B Jones  2
Affiliations

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

Selina Goodman et al. Cancers (Basel). .

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.

Keywords: Lynch syndrome; bowel cancer; cancer surveillance; communication; familial cancer; genetic diagnosis; genetic testing; information sharing; relatives; website.

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Conflict of interest statement

The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.

Figures

Figure 1
Figure 1
Interaction between the different phases of the study and website development.
Figure 2
Figure 2
Two slides from the brief given to the web developer as a presentation.
Figure 3
Figure 3
Document sharing function of the website [60].
Figure 4
Figure 4
Iterative phases of the website development.
Figure 5
Figure 5
Suggested interactions between major themes [60].
Figure 6
Figure 6
Screenshot of the Family Web homepage banner.
Figure 7
Figure 7
Graphic on “About Family Web” page to represent document sharing function [60].
Figure 8
Figure 8
Illustrating some of the elements of the website that users liked.
See this image and copyright information in PMC

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