scholarly journals Improving our model of cascade testing for hereditary cancer risk by leveraging patient peer support: a concept report

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Suzanne C. O’Neill ◽  
Jada G. Hamilton ◽  
Claire C. Conley ◽  
Beth N. Peshkin ◽  
Rosalba Sacca ◽  
...  

AbstractConsensus and evidence suggest that cascade testing is critical to achieve the promise of cancer genetic testing. However, barriers to cascade testing include effective family communication of genetic risk information and family members’ ability to cope with genetic risk. These barriers are further complicated by the developmental needs of unaffected family members during critical windows for family communication and adaptation. Peer support could address these barriers. We provide two illustrative examples of ongoing BRCA1/2-related clinical trials that apply a peer support model to improve family communication and functioning. Peer support can augment currently available genetic services to facilitate adjustment to and effective use of cancer genetic risk information. Importantly, this scalable approach can address the presence of cancer risk within families across multiple developmental stages. This applies a family-centered perspective that accommodates all potentially at-risk relatives. This peer support model can be further applied to emerging topics in clinical genetics to expand reach and impact.

2021 ◽  
Vol 11 (11) ◽  
pp. 1194
Author(s):  
Tia L. Kauffman ◽  
Yolanda K. Prado ◽  
Ana A. Reyes ◽  
Jamilyn M. Zepp ◽  
Jennifer Sawyer ◽  
...  

Guidelines currently state that genetic testing is clinically indicated for all individuals diagnosed with ovarian cancer. Individuals with a prior diagnosis of ovarian cancer who have not received genetic testing represent missed opportunities to identify individuals with inherited high-risk cancer variants. For deceased individuals, post-mortem genetic testing of pathology specimens allows surviving family members to receive important genetic risk information. The Genetic Risk Assessment in Ovarian Cancer (GRACE) study aims to address this significant healthcare gap using a “traceback testing” approach to identify individuals with a prior diagnosis of ovarian cancer and offer genetic risk information to them and their family members. This study will assess the potential ethical and privacy concerns related to an ovarian cancer traceback testing approach in the context of patients who are deceased, followed by implementation and evaluation of the feasibility of an ovarian cancer traceback testing approach using tumor registries and archived pathology tissue. Descriptive and statistical analyses will assess health system and patient characteristics associated with the availability of pathology tissue and compare the ability to contact and uptake of genetic testing between patients who are living and deceased. The results of this study will inform the implementation of future traceback programs.


2019 ◽  
Vol 28 (3) ◽  
pp. 543-557 ◽  
Author(s):  
Soo Jung Hong ◽  
Barbara Biesecker ◽  
Jennifer Ivanovich ◽  
Melody Goodman ◽  
Kimberly A. Kaphingst

2005 ◽  
Vol 60 (1) ◽  
pp. 109-118 ◽  
Author(s):  
Bettina Meiser ◽  
Philip B. Mitchell ◽  
H. McGirr ◽  
M. Van Herten ◽  
Peter R. Schofield

2016 ◽  
Vol 19 (5) ◽  
pp. 307-313 ◽  
Author(s):  
Serena Oliveri ◽  
Gabriella Pravettoni ◽  
Chiara Fioretti ◽  
Mats G. Hansson

1995 ◽  
Vol 32 (10) ◽  
pp. 799-804 ◽  
Author(s):  
M. Decruyenaere ◽  
G. Evers-Kiebooms ◽  
M. Welkenhuysen ◽  
J. Bande-Knops ◽  
V. V. Gerven ◽  
...  

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