Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study
dc.contributor.author | Goodman, S | |
dc.contributor.author | Skirton, H | |
dc.contributor.author | Jackson, L | |
dc.contributor.author | Jones, Ray | |
dc.date.accessioned | 2021-10-25T11:19:50Z | |
dc.date.issued | 2021-05-16 | |
dc.identifier.issn | 2072-6694 | |
dc.identifier.issn | 2072-6694 | |
dc.identifier.other | ARTN 2404 | |
dc.identifier.uri | http://hdl.handle.net/10026.1/18170 | |
dc.description.abstract |
<jats:p>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.</jats:p> | |
dc.format.extent | 2404-2404 | |
dc.format.medium | Electronic | |
dc.language | en | |
dc.language.iso | en | |
dc.publisher | MDPI AG | |
dc.subject | bowel cancer | |
dc.subject | genetic testing | |
dc.subject | familial cancer | |
dc.subject | relatives | |
dc.subject | website | |
dc.subject | information sharing | |
dc.subject | genetic diagnosis | |
dc.subject | communication | |
dc.subject | cancer surveillance | |
dc.subject | Lynch syndrome | |
dc.title | Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study | |
dc.type | journal-article | |
dc.type | Journal Article | |
plymouth.author-url | https://www.webofscience.com/api/gateway?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000654656600001&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=11bb513d99f797142bcfeffcc58ea008 | |
plymouth.issue | 10 | |
plymouth.volume | 13 | |
plymouth.publication-status | Published online | |
plymouth.journal | Cancers | |
dc.identifier.doi | 10.3390/cancers13102404 | |
plymouth.organisational-group | /Plymouth | |
plymouth.organisational-group | /Plymouth/Faculty of Health | |
plymouth.organisational-group | /Plymouth/Faculty of Health/School of Nursing and Midwifery | |
plymouth.organisational-group | /Plymouth/REF 2021 Researchers by UoA | |
plymouth.organisational-group | /Plymouth/REF 2021 Researchers by UoA/UoA03 Allied Health Professions, Dentistry, Nursing and Pharmacy | |
plymouth.organisational-group | /Plymouth/Research Groups | |
plymouth.organisational-group | /Plymouth/Research Groups/Institute of Health and Community | |
plymouth.organisational-group | /Plymouth/Users by role | |
plymouth.organisational-group | /Plymouth/Users by role/Academics | |
dc.publisher.place | Switzerland | |
dcterms.dateAccepted | 2021-05-10 | |
dc.rights.embargodate | 2021-10-26 | |
dc.identifier.eissn | 2072-6694 | |
dc.rights.embargoperiod | Not known | |
rioxxterms.versionofrecord | 10.3390/cancers13102404 | |
rioxxterms.licenseref.uri | http://www.rioxx.net/licenses/all-rights-reserved | |
rioxxterms.licenseref.startdate | 2021-05-16 | |
rioxxterms.type | Journal Article/Review |