Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study
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 info...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2021-05-01
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| Series: | Cancers |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2072-6694/13/10/2404 |
| _version_ | 1797533912238391296 |
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| author | Selina Goodman Heather Skirton Leigh Jackson Ray B. Jones |
| author_facet | Selina Goodman Heather Skirton Leigh Jackson Ray B. Jones |
| author_sort | Selina Goodman |
| collection | DOAJ |
| description | 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 (<i>n</i> = 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. |
| first_indexed | 2024-03-10T11:22:23Z |
| format | Article |
| id | doaj.art-d2618a1cec6f49d3ad5f14c53e3d54a4 |
| institution | Directory Open Access Journal |
| issn | 2072-6694 |
| language | English |
| last_indexed | 2024-03-10T11:22:23Z |
| publishDate | 2021-05-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Cancers |
| spelling | doaj.art-d2618a1cec6f49d3ad5f14c53e3d54a42023-11-21T19:58:35ZengMDPI AGCancers2072-66942021-05-011310240410.3390/cancers13102404Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb StudySelina Goodman0Heather Skirton1Leigh Jackson2Ray B. Jones3College of Medicine & Health, University of Exeter Medical School, RILD Building, Barrack Road, Exeter EX2 5DW, UKSchool of Nursing & Midwifery, University of Plymouth, Drake Circus, Plymouth PL4 8AA, UKCollege of Medicine & Health, University of Exeter Medical School, RILD Building, Barrack Road, Exeter EX2 5DW, UKSchool of Nursing & Midwifery, University of Plymouth, Drake Circus, Plymouth PL4 8AA, UKIndividuals 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 (<i>n</i> = 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.https://www.mdpi.com/2072-6694/13/10/2404bowel cancergenetic testingfamilial cancerrelativeswebsiteinformation sharing |
| spellingShingle | Selina Goodman Heather Skirton Leigh Jackson Ray B. Jones Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study Cancers bowel cancer genetic testing familial cancer relatives website information sharing |
| title | Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study |
| title_full | Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study |
| title_fullStr | Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study |
| title_full_unstemmed | Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study |
| title_short | Development of a Secure Website to Facilitate Information Sharing in Families at High Risk of Bowel Cancer—The Familyweb Study |
| title_sort | development of a secure website to facilitate information sharing in families at high risk of bowel cancer the familyweb study |
| topic | bowel cancer genetic testing familial cancer relatives website information sharing |
| url | https://www.mdpi.com/2072-6694/13/10/2404 |
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