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Grant Details

Grant Number: 5R01CA237369-04 Interpret this number
Primary Investigator: Henderson, Tara
Organization: University Of Chicago
Project Title: Improving Delivery of Genetic Services to High Risk Childhood Cancer Survivors: a Randomized Study of Remote Genetic Services Versus Usual Care
Fiscal Year: 2023


PROJECT SUMMARY Germline cancer genetic testing has become a standard evidence-based practice, with risk reduction and cancer screening guidelines for genetic carriers. Yet, many at-risk patients do not have access to genetic services, leaving many genetic carriers unidentified. Given increasing precision medicine applications, and a limited and geographically restricted workforce of genetic providers, innovative delivery models for genetic services that are responsive to the needs of geographically and sociodemographically diverse patient populations in their local health care systems are needed. Suboptimal access to genetic services is an acute problem for childhood cancer survivors, who have high rates of subsequent malignant neoplasms (SMN). Studies indicate that >10% of survivors carry a pathogenic or likely pathogenic germline mutation in cancer susceptibility genes (eg. TP53, BRCA ½). In order to identify high-risk survivors for early surveillance and intervention, NCCN and Children's Oncology Group Guidelines recommend that survivors with a personal and/or family history of cancer be referred for genetic services. However, <15% of these survivors have access to genetic counseling services and both survivors and their Primary Care Providers (PCPs) are largely unaware of their health risks and thus, adherence to high-risk surveillance guidelines is low. Our studies in adult patients with a personal or family history of cancer suggest that remote telegenetic services (by phone or videoconferencing) may increase access to genetic services and identification of genetic mutation carriers. Yet, our current studies have examined these models partnering on-site with community oncology practices, limiting scalability. This is of particular importance for childhood cancer survivors, who are widely distributed nationally and >85% are receiving their care with PCPs. Thus, our premise is that our adapted in-home, collaborative PCP model of remote telegenetic services can provide a scalable model that will result in increased uptake of evidence-based recommendations for cancer genetic services in survivors. We propose a 3-arm randomized Hybrid 1 effectiveness and implementation study in the Childhood Cancer Survivor Study (CCSS) to evaluate the effectiveness of our in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic testing in childhood cancer survivors compared to usual care (Aim 1), to evaluate the effectiveness of videoconferencing to provide greater increase in knowledge, and decrease in distress and depression as compared to remote phone services (Aim 2a), the moderators of patient outcomes (Aim 2b), and a cost evaluation of the three study arms (Aim 2c). Also, we will conduct a multi-stakeholder mixed-methods implementation evaluation to understand patient, provider and system factors associated with uptake of our remote telegenetic services model, facilitators and barriers to uptake, and recommendations for future adaptation and sustainability (Aim 3). We expect our findings will provide critical data for the basis for further dissemination of these services among cancer survivors and other populations in need of genetic services.


The ENGAGE study: a 3-arm randomized hybrid type 1 effectiveness and implementation study of an in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic services in childhood cancer survivors.
Authors: Henderson T.O. , Allen M.A. , Mim R. , Egleston B. , Fleisher L. , Elkin E. , Oeffinger K. , Krull K. , Ofidis D. , Mcleod B. , et al. .
Source: BMC health services research, 2024-02-28; 24(1), p. 253.
EPub date: 2024-02-28.
PMID: 38414045
Related Citations

Hodgkin Lymphoma Survivors: We Need to Do Better.
Authors: Henderson T.O. , Oeffinger K.C. .
Source: Journal of the National Cancer Institute, 2021-06-01; 113(6), p. 654-655.
PMID: 33351151
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