Experience and Perceptions of a Family Health History Risk Assessment Tool among Multi-Ethnic Asian Breast Cancer Patients.

Sungwon Yoon,David Matchar,Shihui Tang,Hendra Goh,Lori Orlando,Geoffrey Ginsburg,Joanne Ngeow,Si Fung,Rebekah Wu

doi:10.3390/jpm11101046

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.

Highlights

Patients were provided with information about the importance of family health history (FHH) and an FHH worksheet listing relative categories with a description of the conditions collected in the platform
All participants were female with varying stages of breast cancer, nearly half (45%) were stage 2, and the majority were of Chinese ethnicity (55%)
Participants in our study viewed the risk assessment as important for fostering personal control over early detection as a way to prepare for future adversity and financial planning for treatment

Summary

Introduction

In order to overcome some of these barriers, patient-facing FHH collection tools have been developed to improve risk stratification and disease prevention efforts [8,9,10] These tools are designed to offer integrated clinical decision support (CDS) in the form of evidence-based recommendations to improve patient outcomes [11,12,13,14]. The use of these risk assessment platforms results in the improved risk stratification of populations and the uptake of guideline-driven care personalized to the individual

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Discussion

Conclusion