ENGAGE: Expanding Access to Genetic Services for Childhood Cancer Survivors Through Telehealth
- Behavior Change,
- Clinical Transformation,
- Health Equity
43%
of participants completed genetic counseling or testing after telehealth intervention.
The ENGAGE study evaluated whether centralized, telehealth-based genetic services can improve access to genetic counseling and testing for survivors of childhood cancer. This randomized trial demonstrated that remote telehealth delivery can substantially increase uptake of genetic services, supporting more equitable access to survivorship care.
Childhood cancer survivors face a lifelong risk of developing subsequent cancers, yet many lack access to genetic counseling and testing due to geographic, financial, and health system barriers. More than 85% of survivors receive care in community settings where access to genetic services is limited, leaving many individuals with cancer-predisposing genetic variants undiagnosed.
The ENGAGE study, led by PC3I Faculty Angela Bradbury, MD, addressed this gap by evaluating a centralized, remote model for delivering genetic services to increase service uptake. In this randomized clinical trial, the research team randomly assigned 391 adult survivors of childhood cancer to receive either 1.) telehealth genetic services delivered remotely through phone or video conference, or 2.) usual care, which required accessing services locally. In both the telehealth and usual care arms, participants were given information on the value of genetic testing and provided with a flyer detailing the next steps. Participants could then initiate services by following the instructions provided in the study flyer specific to their arm. Participants in the telehealth group were given instructions on contacting the Penn Telegenetics Program, where genetic counselors provided standardized counseling, coordinated testing, and worked with local providers to support care integration.
At six months, 43% of participants who were randomized to the telehealth genetic services completed genetic counseling and/or testing, compared to just 15% in the usual care group. Participants in the telehealth group were significantly more likely to receive both genetic counseling and genetic testing, and 10% of those tested were found to carry actionable cancer predisposing genetic variants.
These findings, presented at the 2024 ASCO Annual meeting and published in The Lancet, show that remote, centralized models can meaningfully expand access to preventive care and improve adherence to guideline-recommended genetic risk assessment. To maximize impact, remaining barriers must be addressed through targeted interventions, such as additional educational support, digital nudges, and policy reform. Addressing these gaps can lead to advancements in survivorship care, improved long-term outcomes, and more equitable access for childhood cancer survivors and their families.
National Cancer Institute
University of Pennsylvania, Penn Telegenetics Program, Ann & Robert H. Lurie Children’s Hospital of Chicago, St. Jude Children’s Research Hospital, and collaborators across the Childhood Cancer Survivor Study network.
Project Leads
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Angela Bradbury
MD
Professor, Hematology/Oncology, Medical Ethics & Health Policy, Perelman School of Medicine
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Project Team
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Mary Ashley Allen
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Gregory Armstrong
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Sarah Brown
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Cara Cacioppo
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Brian Egleston
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Elena B. Elkin
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Linda G. Fleisher
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Hannah Griffin
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Sarah Howe
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Kevin Krull
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Briana McLeod
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Raija Mim
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Kevin Oeffinger
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Demetrios Ofidis
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Melody Perpich
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Elisabeth Wood