scholarly journals Clinical implementation of an oncology‐specific family health history risk assessment tool

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Si Ming Fung ◽  
R. Ryanne Wu ◽  
Rachel A. Myers ◽  
Jasper Goh ◽  
Geoffrey S. Ginsburg ◽  
...  

Abstract Background The presence of hereditary cancer syndromes in cancer patients can have an impact on current clinical care and post-treatment prevention and surveillance measures. Several barriers inhibit identification of hereditary cancer syndromes in routine practice. This paper describes the impact of using a patient-facing family health history risk assessment platform on the identification and referral of breast cancer patients to genetic counselling services. Methods This was a hybrid implementation-effectiveness study completed in breast cancer clinics. English-literate patients not previously referred for genetic counselling and/or gone through genetic testing were offered enrollment. Consented participants were provided educational materials on family health history collection, entered their family health history into the platform and completed a satisfaction survey. Upon completion, participants and their clinicians were given personalized risk reports. Chart abstraction was done to identify actions taken by patients, providers and genetic counsellors. Results Of 195 patients approached, 102 consented and completed the study (mean age 55.7, 100 % women). Sixty-six (65 %) met guideline criteria for genetic counseling of which 24 (36 %) were referred for genetic counseling. Of those referred, 13 (54 %) participants attended and eight (33 %) completed genetic testing. On multivariate logistic regression, referral was not associated with age, cancer stage, or race but was associated with clinical provider (p = 0.041). Most providers (71 %) had higher referral rates during the study compared to prior. The majority of participants found the experience useful (84 %), were more aware of their health risks (83 %), and were likely to recommend using a patient-facing platform to others (69 %). Conclusions 65 % of patients attending breast cancer clinics in this study are at-risk for hereditary conditions based on current guidelines. Using a patient-facing risk assessment platform enhances the ability to identify these patients systematically and with widespread acceptability and recognized value by patients. As only a third of at-risk participants received referrals for genetic counseling, further understanding barriers to referral is needed to optimize hereditary risk assessment in oncology practices. Trial Registration NIH Clinical Trials registry, NCT04639934. Registered Nov 23, 2020 -- Retrospectively registered.

2021 ◽  
Vol 11 (10) ◽  
pp. 1046
Author(s):  
Sungwon Yoon ◽  
Hendra Goh ◽  
Si Ming Fung ◽  
Shihui Tang ◽  
David Matchar ◽  
...  

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.


2019 ◽  
pp. 1-27
Author(s):  
Rachel Webster ◽  
Sarah A. Bannon ◽  
Samuel M. Hyde ◽  
Ashley H. Woodson ◽  
Nancy Yi‐Qian You ◽  
...  

2020 ◽  
Vol 17 (3) ◽  
pp. 229-239 ◽  
Author(s):  
Susanne B Haga ◽  
Lori A Orlando

Improving disease risk prediction and tailoring preventive interventions to patient risk factors is one of the primary goals of precision medicine. Family health history is the traditional approach to quickly gather genetic and environmental data relevant to the patient. While the utility of family health history is well-documented, its utilization is variable, in part due to lack of patient and provider knowledge and incomplete or inaccurate data. With the advances and reduced costs of sequencing technologies, comprehensive sequencing tests can be performed as a risk assessment tool. We provide an overview of each of these risk assessment approaches, the benefits and limitations and implementation challenges.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 1579-1579
Author(s):  
Sonya Reid-Lawrence ◽  
Tuya Pal ◽  
Ingrid A. Mayer ◽  
Xiao-Ou Shu ◽  
Ann Tezak ◽  
...  

1579 Background: Per national practice guidelines, pre-test genetic counseling (GC) through a board-certified or credentialed genetics health professional (GHP) is recommended when testing for hereditary cancer. We sought to compare differences in rates of pre-test GC among young breast cancer (BC) patients tested with or without GHP involvement across three racial groups (Black, Hispanic and non-Hispanic white (NHW)). Methods: A population-based sample of Black, Hispanic and NHW women diagnosed with invasive BC ≤ age 50 from 2009 to 2012 were recruited through the Florida State Cancer Registry. Participants were asked to complete a baseline questionnaire and release medical records for verification of clinical information and genetic testing. We compared the rates of pre-test GC across racial groups in women tested with or without GHP involvement using Analysis of Variance. Multivariate logistic regression analysis was also conducted to adjust for potential confounders. Results: Of 1618 participants, 828 had genetic testing based on medical records and/or self-reported on their questionnaire. There were 170 (20.5%) with GHP involvement (either through consultation and/or test ordering) and the remaining 658 women (79.5%) had no documentation of GHP involvement. Among patients tested without GHP involvement, rates of pre-test GC were significantly lower among Black women (34.8%) compared to Hispanics (80%) and NHW (78.7%) (p < 0.001). In contrast, among those with GHP involvement, rates of pre-test GC were similar among Black (89.7%), Hispanic (81.1%) and NHW (84.6%) (p = 0.89). Conclusions: Our results suggest that among young breast cancer patients tested for hereditary cancer without GHP involvement, Blacks were significantly less likely to receive pre-test GC, compared to the other two groups. In contrast, rates of pre-test GC among those with GHP involvement were similar across all groups. These results suggest a disparity in receipt of pre-test GC (which is standard of care per national guidelines) among Blacks tested without GHP involvement. These findings are concerning given the need to offer guideline-adherent care to all patients receiving hereditary cancer testing.


2018 ◽  
Vol 52 (3) ◽  
pp. 262-271 ◽  
Author(s):  
Jielu Lin ◽  
Christopher S Marcum ◽  
Anna V Wilkinson ◽  
Laura M Koehly

Abstract Background Collecting complete and accurate family health history is critical to preventing type 2 diabetes. Purpose We seek to identify the optimal risk feedback approach that facilitates risk communication between parents and their adult children and helps them develop shared appraisals of family history of type 2 diabetes. Methods In a sample of parent-adult child dyads from 125 Mexican-heritage families residing in Houston, Texas, we examine change in parent-child dyadic (dis)agreement with respect to their shared family health history from baseline to 10 months after receipt of risk feedback generated by Family Healthware. A 2 × 2 factorial design is applied to test how the recipient (one parent or all family members) and the content (risk assessment with or without behavioral recommendations) of the feedback affect (dis)agreement through interpersonal ties, particularly dyadic risk communication. Results Providing risk assessment without behavioral recommendations to the parent, but not the adult child, shifts the dyads toward agreement (relative risk ratio [RRR]= 1.78, 95% confidence interval [CI] [1.18–2.67]), by activating reciprocal risk communication between parents and children (RRR =2.70, 95% CI [1.81–4.03]). Dyads with close interpersonal ties are more likely to shift toward agreement (RRR = 3.09, 95% CI [1.89–5.07]). Conclusion Programs aimed at improving family health history knowledge and accuracy of reports should tailor risk feedback strategically for better intervention effect and leverage a network approach in disease prevention among at-risk minority and/or immigrant populations. Trial Registration Number NCT00469339.


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