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

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.

Strategies to improve implementation of cascade testing in hereditary cancer syndromes: a systematic review

“… USA Randomized controlled trial, 98 Pancreatic ductal adenocarcinoma Remote genetic education and testing Courtney 21 Impact of free cancer predisposition cascade genetic testing on uptake in Singapore. Singapore Prospective cohort study, 826 Not specified Free cascade testing Chen 64 Extended Family Outreach in Hereditary Cancer Using Web-Based Genealogy, Direct-to-Consumer Ancestry Genetics, and Social Media: Mixed Methods Process Evaluation of the ConnectMyVariant Intervention USA Prospective cohort study, 57 Not specified ConnectMy Variant (Web-based genealogy) Katz 33 Cascade Genetic Risk Education and Testing in Families With Hereditary Cancer Syndromes: A Pilot Study USA Randomized controlled trial, 66 Breast cancer Online cancer genetic education followed by free or paid ($50) testing Goodman 65 Development of a secure website to facilitate information sharing in families at high risk of bowel cancer— The Familyweb Study UK Cross-sectional study, 198 Colon cancer Use of website as a file sharing facility Li 18 Impact of subsidies on cancer genetic testing uptake in Singapore Singapore Prospective cohort study, 235 Not specified Subsidy schemes Schmidlen 24 Use of a chatbot to increase uptake of cascade genetic testing USA Prospective cohort study, 377 Not specified Cascade chatbot Garcia 34 Mechanisms to increase cascade testing in hereditary breast and ovarian cancer: Impact of introducing standardized communication aids into genetic counseling USA Prospective cohort study, 40 Hereditary breast and ovarian cancer Use of communication aids Aeilts 66 The impact of a cascade testing video on recipients' knowledge, cognitive message processing, and affective reactions: A formative evaluation. USA Cross sectional study, 373 Hereditary b...…”

“…Mailed saliva kit for genetic testing was provided free of charge. Telephone disclosure of genetic test results, with release of results to primary care physician 70.0 – O’Neil 63 Three sessions of peer-coach lead telephone counseling – – Furniss 41 Remote genetic education and testing 92.0 – Katz 33 Online cancer genetic education followed by free or paid genetic testing 83.3 94.4 Goodman 65 The use of a website as a web-based file sharing facility (Family Web website) – – Schmidlen 24 family sharing tool and chatbot – – Aeilts 66 2 minute animated video for proband to share with ARR – – Caswell-Jin 23 An online, low-cost family testing program 47.5 – Haas 69 Integrating automated family cascade genetic testing into electronic health records – – Frey 70 Direct telephone contact of ARRs made by genetics team 70 – Pande 72 FamilyCONNECT online tool – – Financial arrangements Courtney 21 Collection of funds free cascade testing 21.6 6.1 Li 18 Subsidy schemes -blanket and varied schemes 53.3 47.5 Kassem 74 providing predictive testing for ARR at no-charge – – Implementation strategies Chen ...…”

Acceptability and Usability of the Family Gene Toolkit for Swiss and Korean Families Harboring BRCA1/BRAC2 Pathogenic Variants: A Web-Based Platform for Cascade Genetic Testing

“…However, there are only a handful of trials regarding family communication of genetic testing results and/or cascade genetic testing [ 26 ]. Few studies involving digital communication technologies, such as chatbots or other digital media, describe pilot testing in non-randomized trials and/or without comparisons to a control group [ 27 , 28 , 29 , 30 , 31 , 32 , 33 ].…”