An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia
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(2020) 18:22
RESEARCH
Open Access
An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia Jeanette Yuen1†, Si Ming Fung1†, Chin Leong Sia2, Mallika Venkatramani1, Tarryn Shaw1, Eliza Courtney1, Shao-Tzu Li1, Jianbang Chiang1, Veronique Kiak-Mien Tan3,4,5, Benita Kiat-Tee Tan3,4,5,6 and Joanne Ngeow1,2,7*
Abstract Introduction: Identification of one’s status as a BRCA1/2 pathogenic variant carrier often marks the start of navigating challenging decisions related to cancer risk management and result disclosure. Carriers report unmet informational needs, but studies have yet to explore the specific aspects of and how best to fulfill these needs. This study aims to explore the informational needs of BRCA1/2 pathogenic variant carriers in Asia to inform for the design of educational materials to support risk management decision-making. Methods: Semi-structured in-depth interviews were conducted with two male and 22 female English-speaking BRCA1/2 pathogenic variant carriers, aged 29–66 years, identified through the Cancer Genetics Service at the National Cancer Centre Singapore. A grounded theory approach with thematic analysis was undertaken to extract dominant themes. Results: Four themes were identified: (i) proactive online information seeking behaviors (ii) personalized informational needs; (iii) challenges in sharing the results; and (iv) lack of genetic awareness. Discussion: Participants highlight challenges with sharing their result arising from significant post-result informational needs, which have manifested into proactive online information-seeking behaviors. They desire for an online source of information, where content is personalized, reliable and local. Participants foresee the potential of an online resource to raise genetic awareness. This suggests the use of a culturally tailored online-based genetics resource, to promote result disclosure, empower risk-management decisions and raise genetic literacy rates. Keywords: BRCA1/2, Informational needs, Interview, Online, Genetic awareness
* Correspondence: [email protected] † Jeanette Yuen and Si Ming Fung contributed equally to this work. 1 Cancer Genetics Service, Division of Medical Oncology, National Cancer Centre Singapore, Singapore, Singapore 2 Lee Kong Chian School of Medicine, Nanyang Technological University, 11 Mandalay Drive, Singapore, Singapore Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material i
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