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Web-Based and/or Family-Focused Interventions Facilitating Cancer Predisposition Cascade Genetic Screening

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A special issue of Cancers (ISSN 2072-6694). This special issue belongs to the section "Methods and Technologies Development".

Deadline for manuscript submissions: closed (31 December 2020) | Viewed by 13791

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Special Issue Editor

Prof. Dr. Maria C. Katapodi

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Guest Editor

1. Department of Clinical Research, Faculty of Medicine, University of Basel, 4055 Basel, Switzerland
2. Robert Wood Johnson Foundation Fellow, Princeton, NJ, USA
Interests: cancer prevention and control; web-based and family-focused interventions for hereditary cancer syndromes; cancer predisposition cascade genetic testing
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Special Issue Information

Dear Colleagues,

In many countries around the world, privacy laws for the protection of information regarding genetic testing dictate that communication of test results and predisposition to hereditary cancer syndromes (i.e., HBOC and Lynch syndrome) is initiated solely by the person identified with the pathogenic variant and never from the medical clinic. An essentially medical task, i.e., communication of cancer risk and possible testing, relies on mutation carriers as primary communicators with their at-risk relatives. This strategy has significant limitations in both ensuring contact with the appropriate people and the transmission of accurate information and hinders the potential for cancer predisposition cascade genetic testing.

Technology could play a significant role in facilitating communication and access to genetic information and services for families with hereditary predisposition to cancer. This Special Issue of Cancers gives an opportunity to describe recent and original research and/or reviews regarding cancer predisposition cascade genetic screening. We are particularly interested in the development or application of new platforms, and in approaches that address reaching at-risk relatives and facilitating their access to genetic services. (If you would like to discuss an idea for a paper before committing, please contact the Guest Editor or the Editorial Office.)

Prof. Dr. Maria C. Katapodi
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Cancers is an international peer-reviewed open access semimonthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2900 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

cascade genetic testing
family communication
telegenetics
access to genetic services

Published Papers (4 papers)

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Research

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22 pages, 2883 KiB

Open AccessArticle

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

by Selina Goodman, Heather Skirton, Leigh Jackson and Ray B. Jones

Cancers 2021, 13(10), 2404; https://0-doi-org.brum.beds.ac.uk/10.3390/cancers13102404 - 16 May 2021

Cited by 4 | Viewed by 2415

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. Full article

(This article belongs to the Special Issue Web-Based and/or Family-Focused Interventions Facilitating Cancer Predisposition Cascade Genetic Screening)

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20 pages, 446 KiB

Open AccessArticle

Genetic Testing and Surveillance of Young Breast Cancer Survivors and Blood Relatives: A Cluster Randomized Trial

by Maria C. Katapodi, Chang Ming, Laurel L. Northouse, Sonia A. Duffy, Debra Duquette, Kari E. Mendelsohn-Victor, Kara J. Milliron, Sofia D. Merajver, Ivo D. Dinov and Nancy K. Janz

Cancers 2020, 12(9), 2526; https://0-doi-org.brum.beds.ac.uk/10.3390/cancers12092526 - 05 Sep 2020

Cited by 3 | Viewed by 2859

Abstract

We compared a tailored and a targeted intervention designed to increase genetic testing, clinical breast exam (CBE), and mammography in young breast cancer survivors (YBCS) (diagnosed <45 years old) and their blood relatives. A two-arm cluster randomized trial recruited a random sample of YBCS from the Michigan cancer registry and up to two of their blood relatives. Participants were stratified according to race and randomly assigned as family units to the tailored (n = 637) or the targeted (n = 595) intervention. Approximately 40% of participants were Black. Based on intention-to-treat analyses, YBCS in the tailored arm reported higher self-efficacy for genetic services (p = 0.0205) at 8-months follow-up. Genetic testing increased approximately 5% for YBCS in the tailored and the targeted arm (p ≤ 0.001; p < 0.001) and for Black and White/Other YBCS (p < 0.001; p < 0.001). CBEs and mammograms increased significantly in both arms, 5% for YBCS and 10% for relatives and were similar for Blacks and White/Others. YBCS and relatives needing less support from providers reported significantly higher self-efficacy and intention for genetic testing and surveillance. Black participants reported significantly higher satisfaction and acceptability. Effects of these two low-resource interventions were comparable to previous studies. Materials are suitable for Black women at risk for hereditary breast/ovarian cancer (HBOC). Full article

(This article belongs to the Special Issue Web-Based and/or Family-Focused Interventions Facilitating Cancer Predisposition Cascade Genetic Screening)

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16 pages, 1134 KiB

Open AccessArticle

Parent of Origin Effects on Family Communication of Risk in BRCA+ Women: A Qualitative Investigation of Human Factors in Cascade Screening

by Andrew A. Dwyer, Sharlene Hesse-Biber, Bailey Flynn and Sienna Remick

Cancers 2020, 12(8), 2316; https://0-doi-org.brum.beds.ac.uk/10.3390/cancers12082316 - 17 Aug 2020

Cited by 9 | Viewed by 3309

Abstract

Pathogenic germline variants in Breast Cancer 1/2 (BRCA) genes confer increased cancer risk. Understanding BRCA status/risk can enable family cascade screening and improve cancer outcomes. However, more than half of the families do not communicate family cancer history/BRCA status, and cancer outcomes differ according to parent of origin (i.e., maternally vs. paternally inherited pathogenic variant). We aimed to explore communication patterns around family cancer history/BRCA risk according to parent of origin. We analyzed qualitative interviews (n = 97) using template analysis and employed the Theory of Planned Behavior (TPB) to identify interventions to improve communication. Interviews revealed sub-codes of ‘male stoicism and ‘paternal guilt’ that impede family communication (template code: gender scripting). Conversely, ‘fatherly protection’ and ‘female camaraderie’ promote communication of risk. The template code ‘dysfunctional family communication’ was contextualized by several sub-codes (‘harmful negligence’, ‘intra-family ignorance’ and ‘active withdrawal of support’) emerging from interview data. Sub-codes ‘medical misconceptions’ and ‘medical minimizing’ deepened our understanding of the template code ‘medical biases’. Importantly, sub-codes of ‘informed physicians’ and ‘trust in healthcare’ mitigated bias. Mapping findings to the TPB identified variables to tailor interventions aimed at enhancing family communication of risk and promoting cascade screening. In conclusion, these data provide empirical evidence of the human factors impeding communication of family BRCA risk. Tailored, theory-informed interventions merit consideration for overcoming blocked communication and improving cascade screening uptake. Full article

(This article belongs to the Special Issue Web-Based and/or Family-Focused Interventions Facilitating Cancer Predisposition Cascade Genetic Screening)

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Other

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25 pages, 4607 KiB

Open AccessSystematic Review

Interventions Facilitating Family Communication of Genetic Testing Results and Cascade Screening in Hereditary Breast/Ovarian Cancer or Lynch Syndrome: A Systematic Review and Meta-Analysis

by Vasiliki Baroutsou, Meghan L. Underhill-Blazey, Christian Appenzeller-Herzog and Maria C. Katapodi

Cancers 2021, 13(4), 925; https://0-doi-org.brum.beds.ac.uk/10.3390/cancers13040925 - 23 Feb 2021

Cited by 31 | Viewed by 4606

Abstract

Evidence-based guidelines recommend cascade genetic testing of blood relatives of known Hereditary Breast and Ovarian Cancer (HBOC) or Lynch Syndrome (LS) cases, to inform individualized cancer screening and prevention plans. The study identified interventions designed to facilitate family communication of genetic testing results and/or cancer predisposition cascade genetic testing for HBOC and LS. We conducted a systematic review and meta-analysis of randomized trials that assessed intervention efficacy for these two outcomes. Additional outcomes were also recorded and synthesized when possible. Fourteen articles met the inclusion criteria and were included in the narrative synthesis and 13 in the meta-analysis. Lack of participant blinding was the most common risk of bias. Interventions targeted HBOC (n = 5); both HBOC and LS (n = 4); LS (n = 3); or ovarian cancer (n = 2). All protocols (n = 14) included a psychoeducational and/or counseling component. Additional components were decision aids (n = 4), building communication skills (n = 4), or motivational interviewing (n = 1). The overall effect size for family communication was small (g = 0.085) and not significant (p = 0.344), while for cascade testing, it was small (g = 0.169) but significant (p = 0.014). Interventions show promise for improving cancer predisposition cascade genetic testing for HBOC and LS. Future studies should employ family-based approaches and include racially diverse samples. Full article

(This article belongs to the Special Issue Web-Based and/or Family-Focused Interventions Facilitating Cancer Predisposition Cascade Genetic Screening)

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