scholarly journals Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study (Preprint)

2017 ◽  
Author(s):  
Maria C Katapodi ◽  
Miyeon Jung ◽  
Ann M Schafenacker ◽  
Kara J Milliron ◽  
Kari E Mendelsohn-Victor ◽  
...  
Keyword(s):  
Pilot Study ◽  
Family Communication ◽  
Genetic Test ◽  
Test Results ◽  
Brca Mutations ◽  
Web Based ◽  
Genetic Test Results ◽  
The Family ◽  
Family Gene ◽  
Brca Carriers

BACKGROUND Carriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer. OBJECTIVE The aim of this paper was to describe the development of the Family Gene Toolkit, a Web-based intervention targeting BRCA carriers and untested blood relatives, designed to enhance coping, family communication, and decision making. METHODS We present findings from focus groups regarding intervention acceptability and participant satisfaction and from a pre-post pilot study with random allocation to a wait-listed control group regarding intervention feasibility and usability. RESULTS The Family Gene Toolkit was developed by a multidisciplinary team as a psycho-educational and skills-building intervention. It includes two live webinar sessions and a follow-up phone call guided by a certified genetic counselor and a master’s prepared oncology nurse. Each live webinar includes two modules (total four modules) presenting information about BRCA mutations, a decision aid for genetic testing, and two skill-building modules for effective coping and family communication. Participants in focus groups (n=11) were highly satisfied with the intervention, reporting it to be useful and describing clearly the important issues. From the 12 dyads recruited in the pre-post pilot study (response rate 12/52, 23%), completion rate was 71% (10/14) for intervention and 40% (4/10) for wait-listed control groups. CONCLUSIONS Acceptability and satisfaction with the Family Gene Toolkit is high. On the basis of the findings from usability and feasibility testing, modifications on timing, delivery mode, and recruitment methods have been implemented. CLINICALTRIAL ClinicalTrials.gov NCT02154633; https://clinicaltrials.gov/ct2/show/NCT02154633 (Archived by WebCite at http://www.webcitation.org/6yYNvLPjv)

scholarly journals Development of a Web-Based Query Tool for Quality Assurance of Clinical Molecular Genetic Test Results

2007 ◽  
Vol 9 (1) ◽  
pp. 95-98 ◽  
Author(s):  
Matthew J. McGinniss ◽  
Rebecca Chen ◽  
Victoria M. Pratt ◽  
Arlene Buller ◽  
Franklin Quan ◽  
...  
Keyword(s):  
Quality Assurance ◽  
Genetic Test ◽  
Molecular Genetic ◽  
Test Results ◽  
Web Based ◽  
Genetic Test Results ◽  
Query Tool ◽  
Molecular Genetic Test

Intention to communicate BRCA1/BRCA2 genetic test results to the family.

2008 ◽  
Vol 22 (2) ◽  
pp. 303-312 ◽  
Author(s):  
Andrea M. Barsevick ◽  
Susan V. Montgomery ◽  
Karen Ruth ◽  
Eric A. Ross ◽  
Brian L. Egleston ◽  
...  
Keyword(s):  
Genetic Test ◽  
Test Results ◽  
Genetic Test Results ◽  
The Family ◽  
Brca1 Brca2

Randomized trial of web-based genetic education versus usual care in advanced cancer patients undergoing tumor genetic testing: Results from the ECOG-ACRIN NCI Community Oncology Research Program (NCORP; EAQ152) COMET trial.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 2008-2008
Author(s):  
Angela R. Bradbury ◽  
Ju-Whei Lee ◽  
Jill B Gaieski ◽  
Shuli Li ◽  
Ilana F Gareen ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Usual Care ◽  
Genetic Test ◽  
Genetic Knowledge ◽  
Test Results ◽  
Advanced Cancer Patients ◽  
Web Based ◽  
Genetic Test Results ◽  
Anxiety Depression ◽  
Web Intervention

2008 Background: Enthusiasm for precision oncology may obscure the complex psychosocial and ethical considerations for tumor genetic testing. Low patient genetic knowledge has been documented and heightens the risk for adverse experiences. We developed a web-based intervention to increase genetic knowledge and decrease distress among advanced cancer patients undergoing tumor genetic testing. Methods: 594 patients (80% from NCORP Community Sites) were recruited and randomized to web-intervention (n = 293) or usual care (n = 301), prior to receipt of tumor genetic test results. Primary outcomes were genetic knowledge, anxiety, depression, and cancer-specific distress measured at T0 (prior to intervention), T1 (post-intervention), T2 (after receipt of tumor results) and T3 (3 months post receipt of tumor results). Secondary outcomes included satisfaction, regret and disappointment. The effect of web-intervention was evaluated using t-test, multiple linear regression and logistic regression, with an intent-to-treat approach. Results: Patients randomized to web-intervention had better knowledge improvement than those randomized to usual care (T1-T0, p < 0.0001; T2-T0, p = 0.003). No difference was observed in change scores for anxiety, depression or cancer-specific distress. To find the moderators of intervention effect (including sex, age, education, and literacy) two 2-way interactions were noted with statistical significance: higher depression among those in the intervention arm versus the control arm for patients with lower literacy (p = 0.03); and lower cancer-specific distress among women in the intervention arm than with usual care but no such effect noted in men (p = 0.01). 71% of patients reported receiving tumor test results and this did not differ by arm. Only 20% of patients reported regret and disappointment at T2, which was more likely for those without a mutation of interest (MOI) detected vs those with a MOI detected (OR = 2.08, 95% CI, 1.13 to 3.83, p = 0.02). Conclusions: Web-based education prior to receipt of tumor genetic test results increases patient understanding of tumor genetic testing. While the intervention did not significantly reduce distress, results suggest that women who received the intervention had lower cancer-specific distress than those with usual care. Future refinements to the web-intervention are needed to address low literacy groups, men and patients with no actionable results. Clinical trial information: NCT02823652.

Communicating Genetic Test Results to the Family

2001 ◽  
Vol 24 (3) ◽  
pp. 13-26 ◽  
Author(s):  
Mary B. Daly ◽  
Andrea Barsevick ◽  
Suzanne M. Miller ◽  
Robert Buckman ◽  
Josephine Costalas ◽  
...  
Keyword(s):  
Genetic Test ◽  
Test Results ◽  
Genetic Test Results ◽  
The Family

scholarly journals Family communication about positive BRCA1 and BRCA2 genetic test results

2004 ◽  
Vol 6 (6) ◽  
pp. 503-509 ◽  
Author(s):  
Bobbi McGivern ◽  
Jessica Everett ◽  
Geoffrey G Yager ◽  
Robert C Baumiller ◽  
Amanda Hafertepen ◽  
...  
Keyword(s):  
Family Communication ◽  
Genetic Test ◽  
Test Results ◽  
Brca1 And Brca2 ◽  
Genetic Test Results

Disclosure to the family of breast/ovarian cancer genetic test results: Patient's willingness and associated factors

2000 ◽  
Vol 94 (1) ◽  
pp. 13-18 ◽  
Author(s):  
Claire Julian-Reynier ◽  
Fran�ois Eisinger ◽  
Fran�oise Chabal ◽  
Christine Lasset ◽  
Catherine Nogu�s ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Associated Factors ◽  
Genetic Test ◽  
Test Results ◽  
Cancer Genetic ◽  
Genetic Test Results ◽  
The Family

Cancer risk management and family communication of genetic test results among women with inherited breast cancer genes.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 1532-1532
Author(s):  
Tuya Pal ◽  
Anne Weidner ◽  
Ann Tezak ◽  
Kate Clouse ◽  
Deborah Cragun
Keyword(s):  
Breast Cancer ◽  
Family Communication ◽  
Genetic Test ◽  
Bilateral Mastectomy ◽  
Test Results ◽  
Genetic Test Results ◽  
Family Testing ◽  
Inherited Breast Cancer ◽  
History Of ◽  
Risk Reducing

1532 Background: Identification of inherited breast cancer may guide care, with benefits amplified through family testing. Methods: Females with a pathogenic/likely pathogenic (P/LP) variant in BRCA1/2, PALB2, CHEK2, and/or ATM were surveyed about cancer risk management, family communication of genetic test results, and family testing. Comparisons were made across genes. Results: The 235 participants with P/LP variants (186 BRCA1/2, 28 PALB2, 15 CHEK2, and 6 ATM) had a median age of 54 and 61% had a prior breast cancer diagnosis. For women with P/LP variants in BRCA1/2, PALB2, and ATM/CHEK2, bilateral mastectomy rates were 79%, 61%, and 52%, respectively; and risk-reducing oophorectomy rates were 89%, 30%, and 37%, respectively. All women with PALB2 and ATM/CHEK2 P/LP variants with a bilateral mastectomy had a personal or family history of breast cancer; however, only 27% of those with a risk-reducing oophorectomy had a family history of ovarian cancer. Family communication of genetic test results and family testing rates were higher for those with P/LP variants in BRCA1/2 compared to others. Conclusions: Bilateral mastectomy and risk-reducing oophorectomy were relatively common among women with PALB2 and ATM/CHEK2 P/LP variants in our study, suggesting overtreatment through risk-reducing surgery. Furthermore, strategies to improve family communication of genetic test results and family testing are needed to amplify testing benefits.

All in the family: Evaluation of the process and content of sisters' communication aboutBRCA1 andBRCA2 genetic test results

2002 ◽  
Vol 107 (2) ◽  
pp. 143-150 ◽  
Author(s):  
Chanita Hughes ◽  
Caryn Lerman ◽  
Marc Schwartz ◽  
Beth N. Peshkin ◽  
Lari Wenzel ◽  
...  
Keyword(s):  
Genetic Test ◽  
Test Results ◽  
Genetic Test Results ◽  
The Family ◽  
Family Evaluation
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