Experience and Perceptions of a Family Health History Risk Assessment Tool among Multi-Ethnic Asian Breast Cancer Patients
Abstract
:1. Introduction
2. Materials and Methods
2.1. Overview and Study Design
2.2. Participant Recruitment and Enrollment
2.3. Intervention
2.4. Data Collection
2.5. Data Analysis
3. Results
3.1. Characteristics of Participants
3.2. Perceptions of Knowing Genetic Risk of Cancer: Benefits and Harms
“Knowing the risks will make me more mentally prepared to handle the issues should they arise”. 43 Chinese, Stage 0.
“Cost of cancer treatment can be exorbitant, and not many people can actually afford [it]. So, I think it’s good to have this preliminary assessment, so if they fall under this high-risk group, then they can go for a further test and be financially prepared if results show positive”. 43 Chinese, Stage 0.
“So, for example, I will be more health-conscious in a sense, do go for regular check-ups? I think this [knowing one’s risk] will be helpful”. 44 Chinese, Stage 1.
“After I was diagnosed with cancer, I realized that some of my friends feel very emotional about it. Although knowing my risk is good, but it tends to give me the impression that people around me tend to get more emotional if the results are not ideal and I don’t want to face certain feelings”. 51 Malay, Stage 2.
“Is it possible that the company you are applying for will get hold of such information? If so, then there is a risk of individuals facing employment discrimination”. 52 Chinese, Stage 2.
3.3. Experience of MeTree: Usability
“I think the question with a pictorial representation would actually make a lot of sense to the user. Also, having a table like this makes it more comprehensible than the conventional way of presenting questions. Overall, it’s very simplified and easy to use”. 43 Chinese, Stage 1.
“Because (there are) so many pages, like three pages, I didn’t go through every page. I only read the first page. Besides, those medical terms are not helping either”. 49 Indian, Stage 2.
“I realized I couldn’t complete the form when I was asked about my parents’ and relatives’ health condition[s]. It would be better if I can bring it back and discuss it with my family for a more accurate result”. 55 Chinese, Stage 2.
“This [family genogram] is very hard to fill in. At least, the symbols and shapes on the genogram should be clearly stated. For example, square representing male and circle for female”. 65 Malay, Stage 3.
“Throughout the session, I needed guidance from the [research] coordinator. She helped to clear my doubts on ambiguous terms or questions. I need more instructions. I cannot do this at home alone”. 43 Chinese, Stage 0.
“Although the result is available immediately, I am not provided with the result for record-keeping purposes, which I can show to the doctor next time during the consultation”. 49 Others, Stage 2.
3.4. Perceived Potential of MeTree for Wider Implementation
“I think this [MeTree] is beneficial. I think everyone should go for it because five years ago, when I was diagnosed [with breast cancer], I did not fill [in] any of this questionnaire. So, I was actually thinking, “Could it be family history?” because my father was adopted, so we don’t know anything about his family history. I think this, it’s quite a good questionnaire so that people would know their family history, whether they are (considered) high risk, and if they are, they can go for further genetic tests”. 43 Chinese, Stage 0.
“I don’t feel it really helped people in primary care. I think most Singaporeans already generally know if they are at risk. There are so many campaigns and programs. So, they will not use it [MeTree]” 45 Others, Stage 2
“A lot of people are very sensitive. You can’t even mention the word “death” in front of them, not to mention asking them to take a survey that reveals their risk of developing diseases? That’s a big no-no”. 55 Chinese, Stage 2.
“So what can be expected after completing MeTree? The follow-up process is not made clear to us. Not so nice to leave us in a lurch. If resources allow, it will be nice to have a complete [follow-up] package. Otherwise, I don’t think people will find it helpful”. 52 Chinese, Stage 1.
“I will definitely recommend it to my husband. Like my husband, whose father and mother have a lot of medical problems. So, once he knows his risk of developing diseases, he will take precautions to take care of his health”. 50 Chinese, Stage 4.
“People are very sensitive. They don’t want to know. If you ask my husband, he wouldn’t want to know either. Instead of thinking about all these unhappy and uncertain things, he would rather not know anything. So, I don’t think I will recommend him for this genetic test so as not to generate more worries”. 55 Chinese, Stage 2.
“I know the results will not be deterministic because every individual is different. If the person has a good lifestyle, maybe s/he won’t get cancer at all, right? Like me, I have seven sisters; three of us have (cancer), whereas the other four are perfectly fine. Do you get what I mean? Not hundred percent I will have cancer even if I’m high risk”. 43 Malay, Stage 4.
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Characteristics | N (%) |
Age | 51.1 ± 6.9 |
40–49 | 9 (45.0) |
50–59 | 8 (40.0) |
60–69 | 3 (15.0) |
Ethnicity | |
Chinese | 11 (55.0) |
Malay | 3 (15.0) |
Indian | 1 (5.0) |
Others | 5 (25.0) |
Breast Cancer Stage | |
0 | 1 (5.0) |
1 | 3 (15.0) |
2 | 9 (45.0) |
3 | 1 (5.0) |
4 | 6 (30.0) |
Mean Years since Cancer Diagnosis | 4.4 ± 2.1 |
Referred for Genetic Counselling | |
Yes | 5 (25.0) |
No | 15 (75.0) |
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Yoon, S.; Goh, H.; Fung, S.M.; Tang, S.; Matchar, D.; Ginsburg, G.S.; Orlando, L.A.; Ngeow, J.; Wu, R.R. Experience and Perceptions of a Family Health History Risk Assessment Tool among Multi-Ethnic Asian Breast Cancer Patients. J. Pers. Med. 2021, 11, 1046. https://doi.org/10.3390/jpm11101046
Yoon S, Goh H, Fung SM, Tang S, Matchar D, Ginsburg GS, Orlando LA, Ngeow J, Wu RR. Experience and Perceptions of a Family Health History Risk Assessment Tool among Multi-Ethnic Asian Breast Cancer Patients. Journal of Personalized Medicine. 2021; 11(10):1046. https://doi.org/10.3390/jpm11101046
Chicago/Turabian StyleYoon, Sungwon, Hendra Goh, Si Ming Fung, Shihui Tang, David Matchar, Geoffrey S. Ginsburg, Lori A. Orlando, Joanne Ngeow, and Rebekah Ryanne Wu. 2021. "Experience and Perceptions of a Family Health History Risk Assessment Tool among Multi-Ethnic Asian Breast Cancer Patients" Journal of Personalized Medicine 11, no. 10: 1046. https://doi.org/10.3390/jpm11101046
APA StyleYoon, S., Goh, H., Fung, S. M., Tang, S., Matchar, D., Ginsburg, G. S., Orlando, L. A., Ngeow, J., & Wu, R. R. (2021). Experience and Perceptions of a Family Health History Risk Assessment Tool among Multi-Ethnic Asian Breast Cancer Patients. Journal of Personalized Medicine, 11(10), 1046. https://doi.org/10.3390/jpm11101046