Experience and Perceptions of a Family Health History Risk Assessment Tool among Multi-Ethnic Asian Breast Cancer Patients.
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2021-10-19
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Abstract
A family health history-based risk assessment is particularly valuable for guiding cancer screening and treatment strategies, yet an optimal implementation depends upon end-users' values and needs. This is not only true prior to disease development, but also for those already affected. The aim of this study is to explore perceptions of the value of knowing one's family health history (FHH)-based risk, experience using a patient-facing FHH tool and the potential of the tool for wider implementation. Twenty multi-ethnic Asian patients undergoing breast cancer treatment in Singapore completed an FHH-based risk assessment. Semi-structured one-on-one interviews were conducted and data were thematically analyzed. All participants were female and slightly more than half were Chinese. The acceptance and usage of an FHH risk assessment tool for cancers and its broader implementation was affected by a perceived importance of personal control over early detection, patient concerns of anxiety for themselves and their families due to risk results, concerns for genetic discrimination, adequacy of follow-up care plans and Asian cultural beliefs toward disease and dying. This study uniquely sheds light on the factors affecting Asian breast cancer patients' perceptions about undergoing an FHH-based risk assessment, which should inform steps for a broader implementation in Asian healthcare systems.
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Yoon, Sungwon, Hendra Goh, Si Ming Fung, Shihui Tang, David Matchar, Geoffrey S Ginsburg, Lori A Orlando, Joanne Ngeow, et al. (2021). Experience and Perceptions of a Family Health History Risk Assessment Tool among Multi-Ethnic Asian Breast Cancer Patients. J Pers Med, 11(10). pp. 1046–1046. 10.3390/jpm11101046 Retrieved from https://hdl.handle.net/10161/23961.
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David Bruce Matchar
My research relates to clinical practice improvement - from the development of clinical policies to their implementation in real world clinical settings. Most recently my major content focus has been cerebrovascular disease. Other major clinical areas in which I work include the range of disabling neurological conditions, cardiovascular disease, and cancer prevention.
Notable features of my work are: (1) reliance on analytic strategies such as meta-analysis, simulation, decision analysis and cost-effectiveness analysis; (2) a balancing of methodological rigor the needs of medical professionals; and (3) dependence on interdisciplinary groups of experts.
This approach is best illustrated by the Stroke Prevention Patient Outcome Research Team (PORT), for which I served as principal investigator. Funded by the AHCPR, the PORT involved 35 investigators at 13 institutions. The Stroke PORT has been highly productive and has led to a stroke prevention project funded as a public/private partnership by the AHCPR and DuPont Pharma, the Managing Anticoagulation Services Trial (MAST). MAST is a practice improvement trial in 6 managed care organizations, focussing on optimizing anticoagulation for individuals with atrial fibrillation.
I serve as consultant in the general area of analytic strategies for clinical policy development, as well as for specific projects related to stroke (e.g., acute stroke treatment, management of atrial fibrillation, and use of carotid endarterectomy.) I have worked with AHCPR (now AHRQ), ACP, AHA, AAN, Robert Wood Johnson Foundation, NSA, WHO, and several pharmaceutical companies.
Key Words: clinical policy, disease management, stroke, decision analysis, clinical guidelines
Geoffrey Steven Ginsburg
Dr. Geoffrey S. Ginsburg's research interests are in the development of novel paradigms for developing and translating genomic information into medical practice and the integration of personalized medicine into health care.
Rebekah Ryanne Wu
Dr. Wu is an internal medicine physician and health services researcher. Her main research interest is studying the implementation of precision medicine applications to improve clinical care. She is involved in projects currently looking at a patient-facing family history risk assessment tool, MeTree, which provides individualized risk stratification and clinical decision support recommendations to clinicians and patients. In addition she is also involved in a large scale sequencing program in Singapore looking at the intersection of family health history and genomics to better understand how these data elements can complement one another and create more precise risk predictions. She is a member of NHGRI's IGNITE network as a co-investigator on a multi-site pragmatic clinical trial of the impact of pharmacogenetic testing on management of depression and acute, and chronic pain. She is the implementation science advisor for the VA's Pharmacogenomic Testing for Veterans (PHASER) program, which is working to complete preemptive PGx testing on up to 250,000 Veterans by 2024.
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